When it comes to accessing pediatric specialty care, the more appointment options, the better- especially for busy families caring for a child with complex medical needs. Beginning May 4, families living in the Plano area have another close-to-home location for connecting with Cook Children’s Health Care System and its vast network of pediatric specialty physicians.

Conveniently located just off the Sam Rayburn Tollway between Plano, Frisco, Allen and McKinney brimming with young families, Cook Children’s new multispecialty clinic gives patients increased access to pediatric physicians specializing in neurology, endocrinology, pediatric surgery, pulmonology, gastroenterology, nephrology, urology, plastic surgery and orthopedics. Cook Children’s physician specialists from the Prosper Specialty clinics will rotate through the clinic regularly, giving parents more choice and flexibility in scheduling appointments at a location most convenient to them.

“Patients requiring specialty care often need to see their specialist multiple times, and those with complex medical conditions may see multiple specialists across several departments regularly, said Teresa Baker, Cook Children’s vice president of Primary and Specialty Services. “In addition to the convenience of closer-to-home care, the new clinic increases appointment availability so busy families have more options when scheduling visits. The new location also provides additional space to add more physicians and advanced practice practitioners to meet the needs of families in the fast-growing communities of the region.”

This will be Cook Children’s seventh multispecialty clinic in the Metroplex. Others are located in Alliance, Denton, Hurst, Mansfield, Southlake and Walsh Ranch. The Plano clinic offers 10 exam rooms, including one that will flex as a procedure room, as well as an X-ray unit. While Cook Children’s physicians will rotate through the clinic, it will have full-time, on-site clinical staff, an X-ray technician and front desk personnel.

Damian Campbell, D.O., a Cook Children’s pediatric neurologist, will see patients at the new Plano clinic on Thursdays. He’ll have the ability to offer many of the same evaluations in Plano as in his primary office at Cook Children’s Pediatric Specialties Clinic in Prosper, with the exception of electroencephalograms (EEGs) and some concussion evaluations.

"We’re aiming to be available for patient families every week right from the start of this new project,” Dr. Campbell said. “We know that life gets busy, and juggling work and school can make finding time for appointments a bit tricky. Having more availability close to home is designed to help make that easier. Our goal is for this new venture to help make sure families have more access to the high-quality care and attention that Cook Children’s is known for.”

This new addition to the health system’s network is one more example of Cook Children’s keeping its Promise to the children and families in the communities it serves, says Kevin Greene, president of Cook Children’s – Prosper.

“Our Promise is to improve the health of every child in our care and our communities,” Greene said. “By opening this new specialty clinic in Plano, we are bringing that Promise to the doorsteps of the families we serve. We are no longer asking parents and caregivers to endure long commutes for specialized care. Instead, we are meeting them where they live, work, and go to school—ensuring every child has access to high-quality pediatric care and the opportunity to grow up healthy, regardless of their zip code.”

I do not have adequate words for the pure joy and humility I felt this past week. Our family was chosen to attend the Kidd’s Kids 2023 trip to Disney World and was surprised alongside another incredible, resilient family! 

I was encouraged by some of the most incredible coworkers to apply for this trip. Over the past year and a half, these people have walked alongside our family with shared tears, unexplainable generosity and constant love. My husband and I were reluctant to apply since there are so many families and kiddos who would benefit from a trip like this.

I’ve volunteered and worked at Cook Children’s for two decades and have seen countless kiddos be chosen for Kidd’s Kids. I never thought I would ever be in a position where my own family qualified. However, as I reached out to my friends and coworkers for advice and thoughts, I was only met with encouragement to put in the application. We had just decided to cancel our plans to go to Disney later this year due to finances, so we ultimately decided we should put in the application and see what happened.

Our middle daughter, Averly, was diagnosed with a low-grade glioneuronal (brain) tumor in April 2022 after having a seizure at home on March 29th. Our PCP, M. Kathleen Powderly, M.D. of Cook Children's Pediatrics Magnolia, ordered an MRI in addition to many other tests and within a week found the tumor. 

The same week, we were attending my grandfather’s funeral and grappling with shock and grief. The next five months consisted of many doctor appointments seeking opinions from all over the country. 

This time last year, our daughter was headed into a nine-hour brain surgery to remove her tumor just behind her motor cortex that controls her right side. Her surgery was on Aug. 24, 2022. Our neurosurgeon was able to resect 98-99% of her tumor. She had right-sided weakness and loss of feeling in her right foot and great toe following surgery; however, she has regained nearly all her feeling and is very strong. Following surgery, Averly has followed up every three months at St. Jude Research Hospital to monitor the small amount of residue tumor and will continue to follow up there indefinitely.

All three of our girls have been so strong and resilient. Through moments of sadness and frustration, they have come out on the other side more beautiful and with deeper faith. Topics I never thought I would be addressing with them, though, have become normal conversations in our home – tumors, cancer, death, surgery, and countless stories of others we have met along the way. Averly has unwavering faith and has maintained an incredible sense of humor since her tumor (affectionately named Wally for his comparison to walnut-size) was evicted. My other girls have grown in empathy and flexibility. Yet – they are kids and this has all been too much at moments. 

When we returned from our vacation, I was expecting to come home to news about our selection status with Kidd’s Kids, but we had no mail. I dreamt Sunday night that we weren’t accepted. So in worry, I reached out to Daniel D. Guzman, M.D., on Monday. While he didn’t have an answer for me, he did need our family for a photo shoot for Aim for Safety on Tuesday. It was only the second day of school, but I figured there wouldn’t be a better time and this would be a fun experience for the girls.

I pulled everyone from their lunch hours on Tuesday and we headed up to the hospital. He had told me there would be another family with us, so I wasn’t surprised to see Danny Peltier and his family. As we walked into the Child Life Zone, I could never have envisioned that moment. 

So many precious faces staring back at all of us – “You’re going to Disney World!” It was the pinnacle of support and love! As I looked at my kids’ faces, my eyes blurred with tears. 

Averly had nothing but PURE joy and excitement. Emilynn, my oldest, was moved to tears and that just undid me – tears of joy and disbelief. My sweet Maelee was so confused and overwhelmed that she melted down. #reality

She was such a picture of receiving great news after hard times…sometimes you just don’t know how to step out of the hard. Eventually, it made sense to her and I can report that she is THRILLED!

Averly immediately bonded with the Peltier’s daughter. As I surveyed the room, I saw all those who had loved and supported us from the first day with true extravagance! I was so overjoyed for my girls.

When I met Kidd Kraddick at Cook Children’s a little over 20 years ago, I never imagined my future family would benefit from his love and legacy! This is going to be a trip of celebration for our family and all the other Kidd’s Kids families – celebration of resiliency and choosing to say ‘yes’ to hard! We are deeply grateful and humbled for this opportunity! 

Twelve-year-old Adalyn Gibson rarely gets sick. When she fell asleep early one night on the couch, her mom, Chelsey, thought a late night and cheer practice had taken a toll. After vomiting and complaining of a stomachache along with trouble walking, Chelsey made an appointment with the pediatrician.

“When the pediatrician felt the right side of Adalyn’s stomach, she almost jumped off the table because the pain was so bad,” Chelsey said. “Then she asked Adalyn to jump and when she landed it hurt.”

From a Doctor Visit to the Operating Room

The pediatrician told Chelsey to take Adalyn to Cook Children’s – a place Chelsey had never stepped foot in. A sonogram in the Emergency Department revealed an enlarged appendix. José L. Iglesias, M.D., medical director of Pediatric Surgery, would need to perform an appendectomy on Adalyn that night.

“Everything moved fast – within minutes they were getting her ready for surgery,” Chelsey said. “When I met Dr. Iglesias, he had already done two appendectomies that day. I had complete confidence in him.”

Adalyn’s fear of needles quickly disappeared as soon as the child life specialist worked with her on breathing exercises and distracted her with an iPad. She also felt reassured after finding out how many appendectomies Dr. Iglesias performs each year.

“He took time to listen to me,” Adalyn said. “It was a good experience.”

Dr. Iglesias removed Adalyn’s appendix with minimally invasive surgery by creating an incision in her belly button. Since Adalyn’s appendix had not ruptured, she was able to be discharged and went home the next day. Seven days after surgery, she hiked 5 miles through the Smoky Mountains.

Signs of Appendicitis Versus a Stomach Virus

Dr. Iglesias said appendicitis is a common diagnosis in the pediatric age group and his pediatric surgery team performs about 900 appendectomies each year. He calls appendicitis one of the great mimics of other conditions such as stomach viruses, flu or strep throat since it doesn’t always follow the rules. If the child experiences a big change in bowel habits or a lot of vomiting, chances are the cause is a stomach virus.

Symptoms of appendicitis:

• Vague belly pain in the middle – in the early stages
• More focal pain – right lower quadrant
• Nausea (as inflammation increases)
• Fever
• Appetite changes
• Pain when moving

Once symptoms begin, the appendix gets more inflamed and bacteria takes over. After about 24 to 36 hours, the appendix can rupture which increases the risk of worsening infection and makes removing the appendix more of a challenge. Once ruptured, IV antibiotics are required for a longer course.

“It depends on how the body fights it,” Dr. Iglesias said. “Sometimes the body forms abscesses and can turn septic.”

Risks of an appendectomy include infection, bleeding and damage to nearby structures. The risks go up according to the amount of inflammation. Because of the specialists’ experience, the overall risk at Cook Children’s is very low.

A Thriving Teenager

Chelsey said she knew they were at the right place as soon as they walked in the doors. Adalyn is back to her active self with only a few tiny scars. She is an avid reader and actively involved in all sports especially volleyball, basketball and cheer.

“Everyone at Cook Children’s did a phenomenal job,” Chelsey said. 

José L. Iglesias, M.D., FACS, Medical Director of Pediatric Surgery at Cook Children’s Medical Center, who was the lead surgeon during Cook Children's first separation of conjoined twins, was featured on the cover - “Inside Cook Children's Miraculous Separation of Conjoined Twins.”

Dr. Iglesias, Ben Gbulie, M.D., plastic surgeon; Chandra Reynolds, M.D., lead anesthesiologist; Marty Knott, D.O., primary surgeon; Mary Fran Lynch, M.D., neonatologist; and Chad Barber, M.D., neonatologist were featured in the nine-page spread. This issue is available on newsstands now.

Fort Worth Magazine: “It’s rare as it is, being born as conjoined twins. And to survive as long as they have, even rarer. But to separate via a historic procedure at Cook Children’s Medical Center makes the lives of AmieLynn and JamieLynn Finley a miracle.”

Read the full story here.

By Eline Wiggins

Formerly-conjoined twin AmieLynn Finley went home on Friday for the first time to join her twin sister JamieLynn, parents and the rest of her family.

In January, JamieLynn and AmieLynn made history as the first conjoined twins to be surgically separated at Cook Children’s. The girls were conjoined at the chest and shared a liver. Their 11-hour surgery involving a team of 25 medical professionals, including six surgeons, made headlines around the world.

Amie, the quiet twin compared to feisty JamieLynn, has made huge progress even though her journey has been more difficult. While JamieLynn went home on March 21, Amie stayed at the Cook Children’s Neonatal Intensive Care Unit (NICU) to recover from a recent surgery to improve her chest incision and create more space for her heart, diaphragm and lungs.

On April 7, Amie left the hospital in a car seat with her parents, Amanda and James Finley, JamieLynn, two older siblings and cousin. The family shared hugs and tears with the girls’ care team as they loaded their stuff for the last time in their minivan. Today, the whole family is together, in their own home, at last.

“This is kind of the beginning again,” James said as he cradled JamieLynn. “Surgery was one beginning and now we’re going home to another beginning.”

“It’s definitely a weight lifted,” Amanda said. “I’m excited and happy, it’s a lot of emotions. We still have a long way to go.”

Both girls will have some work to do, including rehabilitation, to help them reach their full potential. When the twins were conjoined, Amie developed scoliosis as she had a natural inclination to lean back and pull away from JamieLynn. The girls’ care team hope they will grow up healthy, happy and independent young ladies with their amazing family.

“It is a blessing to watch the girls heal through a major operation, and see the various milestones such as being weaned off of their ventilators, then oxygen; watch as their intestines start to tolerate increasing feeds and then watch as they learn to feed orally,” said José Iglesias, M.D., FACS, Medical Director and Lead Surgeon at Cook Children’s.

“Both girls are so tough!” said Brianne Galvan, RN, the girls' nurse in the NICU. “They went through some pretty tough times but came out smiling in the end. It was amazing for me to see their resilience and to be a part of their story! I will miss their sweet faces and smiles tremendously!”

Amanda and James have spent a lot of time at the NICU since the girls were transferred there shortly after they were born in October. At their Fort Worth home, the girls will finally share the same room again.

“I’m so excited for the girls to be able to assimilate into their new home with their entire family 24 hours a day. My wish for them is that they get to experience all of the normal joys of family life that they haven’t been able to experience in the hospital,” said Neonatologist Fran Lynch, M.D. “These girls are truly remarkable and I can’t wait to see what they accomplish in their lives moving forward.”

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they were joined at the abdomen and shared one or more internal organs.

“With so many steps in their journey it reminds us how big and how great our Cook’s Children’s family is to help them achieve milestone after milestone,” Iglesias said. “I’m proud of the loving and attentive family and proud of an amazing team is probably the best summary I have.”

For those wishing to assist the Finley family in this new chapter of their lives, a fund has been created at EECU in Fort Worth. The family also has a baby registry at Walmart.

RELATED STORIES:

Formerly-Conjoined Twin JamieLynn Discharged from Cook Children's NICU, Sister AmieLynn Stays to Recover (checkupnewsroom.com)

‘We Did It’: Conjoined Twin Girls Separated at Cook Children’s Medical Center Make History (checkupnewsroom.com)

Q&A: Inside the Historic Conjoined Twin Separation Surgery with Jose Iglesias, M.D. (checkupnewsroom.com)

By Eline Wiggins

Five-month-old JamieLynn Finley is home in her own bed for the first time in her life. 

In January, JamieLynn and AmieLynn made history as the first conjoined twins to be surgically separated at Cook Children’s. The girls were conjoined at the chest and shared a liver. Their 11-hour surgery involving a team of 25 medical professionals, including six surgeons, made headlines around the world.

On Tuesday, March 21, Jamie was discharged from Cook Children’s Neonatal Intensive Care Unit (NICU), nearly two months to the day of her separation. She left the hospital in a car seat with her parents, Amanda and James Finley, and Jamie’s three older siblings. It is a big day for the Finley family.

“We’ve been looking forward to this for a long time,” said the girls’ doctor, Mary Frances Lynch, M.D., neonatologist at Cook Children’s.

While Jamie is starting her new chapter at home, Amie is staying in Cook Children’s NICU for at least a few more weeks. Amie’s journey has been more difficult and she is continuing to recover from a recent surgery that improved her chest incision and created more space for her heart, diaphragm and lungs.

“There were some moments that were scary,” James said.

The twins will be away from each other until Amie can head home, which is expected to happen within a month or so. Jamie has recovered so well since the separation surgery, she’s currently bouncing and babbling to anyone who will listen. She’s going home with a gastrostomy tube (G-tube) to help with her feeding and continued growth. However, by all indications, she’s on her way to being a healthy and happy child.

“We’re excited that we get to get her home,” James said. “We’ll have some good bonding time, but at the same time, Amie is still up there so it’s kind of a double-edged sword. We’re happy Jamie is coming home, but they’re not going to be together for a bit.”

On Tuesday morning, Jamie and Amie laid side-by-side and took a ride in their red wagon as their mom Amanda pulled them down the NICU hallways.

“Hi, sugar pudding,” James smiled and said to the girls. 

The girls are growing up fast and hitting their milestones. Jamie is about to start rolling over, Amanda said. Amie says “hello” and both girls do their best to talk.

Amanda joked that Jamie will miss all the attention she gets from the nurses and health care workers in the NICU.

At home, Amanda is excited to hold the girls in their new rocking chair. The girls have many new friends waiting to meet them too, including Amanda and James’ neighbors.

Between their three older siblings, family and neighbors, the girls will be showered with lots of love inside their own home and in their new nursery.

“Everybody is ready to see them,” James said.

RELATED STORIES:

‘We Did It’: Conjoined Twin Girls Separated at Cook Children’s Medical Center Make History (checkupnewsroom.com)

Q&A: Inside the Historic Conjoined Twin Separation Surgery with Jose Iglesias, M.D. (checkupnewsroom.com)

The Surgical Team that Made History at Cook Children's (checkupnewsroom.com)

As the Surgeon-in-Chief for Cook Children’s Healthcare System, Eric Hubli, M.D. knows that every surgery needs a backup plan. In many cases, one backup plan is not enough.

“The key to a really good surgeon is the ability to adapt. When operations move in a unique or unexpected direction, you have to be able to create plans b, c, d and e,” Dr. Hubli said.

During the separation procedure for 16-week-old conjoined twins AmieLynn and JamieLynn Finley, multiple layers of plans were considered and vetted in order to give the girls a chance at life on their own. Dr. Hubli has been a colleague and champion for surgeons at Cook Children’s for the past 15 years. Now he is part of a multispecialty team that came together in an effort to understand and manage every nuance of the separation surgery.

Dr. Hubli’s primary role before the surgery was to assist the other surgeons with the organizational process to remove any barriers so their vision could be realized.

“We put our minds together, reviewed all the clinical data and thought about where the challenges would be," Dr. Hubli said. "We then worked to solve them. One person cannot figure it all out, so it was truly a blessing that we had surgeons, anesthesiologists and multiple doctors from different backgrounds. The various viewpoints allowed us to see things from many angles and these collegial interactions were critical to our future success. There were no egos for we were all focused on one goal – a safe and successful surgery.”

Journey to Plastic Surgery

When Dr. Hubli started medical school at Tufts University School of Medicine, he planned to become a pediatrician, but one surgery changed everything.

“During my first clinical rotation, I saw an operation for the first time in my life," Dr. Hubli said. "It was the coolest thing that I had ever seen. The patient went to sleep and woke up ‘fixed.’ I thought the procedure was nothing short of miraculous so right then and there, I decided that I was going to be a surgeon. There are many surgical fields, but I decided on pediatric craniofacial/cleft and plastic surgery because I love working with kids and I enjoy the challenge associated with the uniqueness of every surgery. No two cases are alike, so every operation requires its own unique solution.”

As medical director of Craniofacial and Cleft Services at Cook Children’s, Dr. Hubli brings more than 29 years of craniofacial, cleft and pediatric plastic surgery experience. His focus is exclusively on children with reconstructive craniofacial and cleft issues.

“One of the things I love about pediatric craniofacial surgery is that I get to be with my patients throughout their childhood and teenage years," Dr. Hubli said. "I meet them as a baby and then travel along with them as they grow and develop. Facial structures change as we grow so I monitor my patients and make surgical adjustments when needed. I have two kids of my own, but I consider all these patients to be mine as well.”

Giving the Twins a New Lease on Life

Early on January 23, Dr. Hubli felt more than ready. Gathered outside the Operating Room doors, he joined the twins’ team of 25 medical staff as the group took a moment to pray for the long day ahead. All the hours of planning and replaying different scenarios in their minds would play out in real life.

Once they walked through the Operating Room doors, Dr. Hubli was confident that each team member knew their role and that the group was up to the challenge ahead. He wore green scrubs along with AmieLynn’s team and worked with the pediatric surgeons to perform her closure after the separation. Dr. Hubli said mental nimbleness is an essential part of the surgery – something his team is very familiar with and practices every day. 

“In surgery, you have to expect the unexpected," Dr. Hubli said. "Even the most straightforward case may have a surprise.  On top of that, surgeons who practice in the pediatric realm face the unique challenge of changing patient size. One day you may be operating on a premature baby who weighs less than three pounds and the next day a 300-pound, 16-year-old offensive lineman from the local high school’s football team may be on your OR table. You have to be able to adjust.”

This ability to adjust is demonstrated by all those who participated in this unique surgery. Surgeons, anesthesiologists, scrub techs, nurses, CRNAs, administrators; every member of the Cook Children’s team understands these challenges and each one is uniquely prepared to rise to the occasion.

Milestones Lead to Historic Moment

Many milestones brought Cook Children’s to this historic moment of separating conjoined twins.

“When I think of the milestones of our surgery program, I think more about our milestones as a medical center because we are all connected to accomplish the same goal," Dr. Hubli said. "In my mind, that is what makes Cook Children’s unique. Across the board, from the police officers to the food services and environmental services employees to the Radiology department, from the lab technicians to the CEO and CFO – everyone is all in. The Cook Children’s family has a vocational dedication to caring for these kids and their families. Every person pulls in the same direction – we are here for the kids and their families. This laser focus is why the hospital and our surgery department are top-notch. I have worked in other facilities but Cook Children’s is special – going that extra step is our standard. The caring and kindness you feel at this hospital is genuine. Every patient and family really matters to our staff.”

With every year that passes, Cook Children’s attracts new highly talented people. Dr. Hubli said over the span of 15 years since he began at the hospital, the main campus has expanded from one building to a destination hospital system that covers eight city blocks. New Operating Rooms, new patient rooms, a new NICU and advanced medical devices were brought to Cook Children’s. A new medical center in Prosper opened this month.

“I’ve seen nothing but incredible growth. Every year we enhance our facilities and our staff. In turn, this means that our patients have access to more service lines and care options. The surgery department is a great example of this growth. In the past few years, every surgical service line has added new surgeons. These surgeons have different specialty training which broadens our ability to meet the needs of our community. If your child has a neurosurgical, orthopedic, urological, craniofacial/cleft, ENT, ophthalmologic, pediatric or cardiac surgery issue, we have the staff to assist. In fact, the breadth of the surgery program at Cook Children’s has been recognized by the American College of Surgeons and the medical center has been recognized as a Level One Children’s Surgery Center. This means the hospital rates as a high-end, full-service pediatric facility.” 

By the Numbers

• Surgeries performed at Cook Children’s every year – 20,000
• Sets of conjoined twins born viable in the world each year – 5 to 8
• Percentage of conjoined twins that are female – 70
• Hours spent planning separation surgery – hundreds
• Medical staff in OR for separation surgery – 25
• Total hours in Operating Room for separation surgery – 11
   

‘Every surgeon is potentiated by our wonderful staff'

Dr. Hubli said surgery involves much more than the surgeon. He firmly believes that surgery is a team sport. 

“It’s great to have the best surgeon in the world on your staff, but that surgeon is useless unless the rest of your hospital can meet the challenges presented by complex surgical care. I am happy to say that Cook Children’s has the required talent. From Central Supply to the PICU, from Environmental Services to the C suite, our team is ready, willing and able. This support allows every surgeon to maximize his/her talent as they are all potentiated by this wonderful staff.”

Looking beyond the clinical realm, Dr. Hubli points to the commitment and dedication of the Cook Children’s administration and the surrounding community as key factors in bringing the hospital to this point.

“We can do this case because of the talent we have in the building, the administrators we work with and the community that we serve who supports us unequivocally. I really feel the community is behind us in all we do. The care that we give to children and families when they come in is returned tenfold from the community we serve. Whether it’s time or treasure, the people of our community are 100% behind us. It’s this give and take that makes Cook Children’s great. And that’s why I think we continue to be very successful.”

“I am proud that we have grown to a point where we can meet the challenges presented by the most complex cases.  I am also proud that we have the team right here in Fort Worth. But it’s not personal pride – it’s pride in our team. I am humbled to work with a group of caring, dedicated and giving people. Our Promise speaks to caring for the children and families of our community. I am honored to be able to work with a group of people that bring Our Promise to life.”

It's Personal

Dr. Hubli knows what it feels like to hand over his child to a surgery team. Seven years ago, his son underwent surgery at Cook Children’s – an experience that changed his perspective. 

“I walked into the building that day as a parent, not a surgeon,” Dr. Hubli said. “Before my son’s surgery, I always used to see the clowns walking through the hall and didn’t think much of it. But then the clowns came to my son’s room, and it was the first time I saw him smile in two weeks. That event reminded me that every member of the Cook Children’s team contributes in their own special way. I love those guys.”

Twins AmieLynn and JamieLynn Finley won the hearts of the nurses who fed, diapered and bathed the girls a little differently from other babies in the Cook Children’s NICU.

For the first three and a half months of their lives, AmieLynn and JamieLynn were joined from their breastbones to their bellies. The girls could lie only on their sides, face to face, because their chest/abdomen areas were connected. Caring for them in the NICU required some modification of the usual tools and techniques for infants.

Surgeons at Cook Children’s separated AmieLynn and JamieLynn on Jan. 23 in a rare and complex operation, a first for our medical center. Two separate isolettes brought the girls back to the NICU to recover under the watchful eye of the neonatologists and nurses who know them best.

“I’m excited that we’ve been part of their story,” said NICU Director Brittany McLaughlin, RN. “The team’s been very creative and innovative.” 

Born in October at Texas Health Harris Methodist Hospital Fort Worth, the pair were transported at five weeks to Cook Children’s, where the NICU staff stepped up to the unique challenges of caring for conjoined twins. Consider diaper changes, for instance: “There’s lots of legs flailing everywhere. When they’re both awake and moving, you have to kind of wrangle one’s legs away while you change the other one,” said Brianne Galvan, RN. “You have to be fast.”  

Or lifting their combined weight of about 22 pounds: “You’re not just picking up one heavy baby. It’s a lot more positioning,” said Raye Urbanek, RN. “You have double the number of wires you’re trying not to tangle as you’re taking them from the bed.”

Brianne has been JamieLynn’s primary nurse and Raye has been AmieLynn’s primary nurse since their arrival in November. NICU Manager Megan Maxwell, RN, prepared the setup for their room, which required a bit of layout reconfiguring for monitors and other equipment. Color coding – green for AmieLynn, purple for JamieLynn – designated the name bands, cords and other gear on each girl’s side of the bed.

An additional step to safeguard patient identification happened every time the nurses turned the girls over. Nurses would alternate the spot where the girls’ heads and feet went in the bed to keep AmieLynn always on the left and JamieLynn always on the right after they were turned. “That’s so that we’re not confusing which one’s on which side,” Megan said. “That was obviously a big point of concern. We wanted to keep them safe.”

During the time they were conjoined, the girls’ faces were so close that they could suck on each other’s mouths. That made it tricky to feed them. Speech therapists at Cook Children’s helped by recommending ways to angle the twins’ heads to accommodate bottles.

Bath time required a round TurtleTub rather than the narrower standard model. The girls wore mittens even during their baths to cover their fingernails.

“We just swaddle them up and keep mittens on them because they will start to scratch on each other and then get angry,” Raye said. “If you keep the mittens on, then you can position them in the TurtleTub and have padding for their heads. They’re calm and happy and they love bath time.”

The twins could be propped up on a Boppy pillow or under a jungle gym for playtime. Other stimulation included music, physical and occupational therapy. Stretching exercises helped with the tight muscles in their necks and arms.

Family visits were key too. Their parents, James and Amanda, came to the NICU every day from Saginaw to feed and hold the girls. The babies liked to watch their entertaining 7-year-old brother and be soothed by the songs their grandmother sang to them.

Despite their shared anatomy, the twins developed distinct personalities. JamieLynn is known for her sass and strong will, while AmieLynn is easygoing and observant. Nurses say the girls used to arch their backs like they were trying to get away from each other. It wasn’t easy to keep a fussy baby from waking up her sleeping sister when they’re joined together.

“Amie’s gotten pretty good at sleeping through a lot of Jamie’s antics. But sometimes Jamie’s just punching her and it wakes her up and she is not happy,” Brianne said.

The nurses use words like “amazing,” “feisty” and “beautiful” to describe the twins. They look forward to cuddling the girls one at a time. Now that they're recovering in separate beds, Brianne predicted that AmieLynn and JamieLynn would miss the constant close proximity of being connected. “We’re going to have to figure out something so they can see each other in the NICU.”

Mary Frances Lynch, M.D. is the neonatologist for JamieLynn. Chad Barber, M.D. is the neonatologist for AmieLynn. Each has 16 years’ experience at Cook Children’s.

Dr. Lynch cited some medical complications that arose from conjoining:

• Limited mobility. The twins couldn’t be placed on their backs or tummies. They had to be turned frequently to prevent positional deformities and skin from breaking down.
• Breathing issues. JamieLynn needed oxygen by nasal cannula.
• Feeding concerns. IV nutrition and nasogastric feeding tubes allowed them to get their full feeding if they weren’t able to bottle feed. One twin grew significantly more than the other, likely related to their shared blood supply.

“Our primary focus in the NICU prior to surgery was to optimize their nutrition so that they could grow as much as possible,” Dr. Lynch said. “The bigger they are and the better their nutrition is, the easier their recovery after separation.”

During their post-surgery stay in the NICU, Dr. Barber said, major concerns include respiratory support and pain control. He and Dr. Lynch feel fortunate to take care of sick babies alongside the entire NICU team.

“It’s a big honor to be trusted by parents in the NICU,” Dr. Barber said. “Every day we have parents who are basically turning their child’s life over to us and believe in all the decisions that we make.”

Uzoma “Ben” Gbulie,

“I’ve been looking out for these babies since they were in the womb. I spent a lot of time studying intrauterine ultrasounds and MRI images even before they were born. They’re basically like family to me,” Dr. Gbulie said.

Giving Patients a Ray of Hope

In elementary school, Dr. Gbulie realized becoming a doctor was his calling. By the time Dr. Gbulie graduated from medical school, he knew surgery would be his path. He started out in General Surgery but during his second year of training discovered that he wanted to repair instead of remove.

“I have been privileged to train and become a board-certified General Surgeon, board-certified Plastic Surgeon as well as a Pediatric and Craniofacial Plastic Surgeon. Plastic surgery is very rewarding to me because it allows me to fix things and replace whatever was removed so it gives my patients a ray of hope. Filling that void in someone else’s life brings me great fulfillment.”

Finding the Right Facility for the Twins 

This is Dr. Gbulie’s astonishing third time managing a set of conjoined twins. He had already been involved in two prior separation surgeries – one in 2011 where the male twins were joined at the sacrum, and the other in 2016, where the female twins were joined at the hips/pelvis.

“A separation surgery is as complex as it gets. It’s rare to do even one of these cases in one’s career, and a privilege to be invited to take care of a third set of conjoined twins,” Dr. Gbulie said.

When the twins’ mom Amanda Arciniega was only three months pregnant, she reached out to Dr. Gbulie after her mother-in-law’s best friend mentioned she knew a surgeon who had experience with conjoined twins. Amanda and her husband, James Finley, met with him at his office. 

“We had a long talk about where and how it would be best to deliver the babies and eventually separate them," Dr. Gbulie said. "They wanted the assurance that if they stayed in the area, we had a facility where they could be separated. Being a member of the Surgery department at Cook Children’s Medical Center, I was very glad to assure them that Cook Children’s definitely has that capability.”

Expect the best and prepare for the worst 

Dr. Gbulie said it is humbling when you take care of small babies who can’t make decisions for themselves. In the world of pediatrics, it’s really a doctor, parent and patient relationship. 

“As the days became closer to the actual separation, the mother became more emotional," Dr. Gbulie said. "The family has trusted not only me, nor the entire team but also Cook Children’s Medical Center to take care of their precious babies.” 

By reviewing the surgical anatomy, imaging and operative plan enough times that it became second nature, Dr. Gbulie felt that they had reduced the chances of unanticipated surprises. He also planned the original incisions since the way they open affects the way they close. The main challenge for his part would be the complexity of the closure.

The closure could be a complex repair or possibly require a graft or tissue substitute.

“That portion would be a game-time decision depending on what we find and how the babies are doing,” Dr. Gbulie said.

Once the separation is done and closure completed, the twins will be handed over to the Neonatal ICU team. 

“Of everything I have learned from other separations, one of the most important lessons is the importance of the perioperative care," Dr. Gbulie said. "The preparation of the twins by the neonatal unit, making sure they were gaining weight, their electrolytes were normal, their respirations optimal and so forth – all of those allow them to tolerate a very long operation, followed by the hugely important post-operative care. It really does take a village.”

Dr. Gbulie’s motto for surgeries such as this one is to expect the best and plan for the worst. 

“And with God, it will go great.”

Indescribable Joy

On January 23, the day of separation, Dr. Gbulie remained focused. 

“Knowing it is my responsibility to take care of another human being, especially when it is a child, is a huge motivator and keeps me focused no matter how long the surgery takes,” Dr. Gbulie said.

He made the original incisions to be sure the skin flaps were protected for good closure. 

“Once we got into the nitty gritty parts of separating the liver and bowel, I took a step back,” Dr. Gbulie said.

For the next 2.5 hours, Dr. Gbulie took on the role of assisting the pediatric surgeons as the separation of the organs proceeded. Time seemed to stand still as he watched all the hours of meticulous planning by the team fall into place.

Following separation, the pediatric surgery team worked on the diaphragmatic and abdominal fascial repair using mesh. Then it was time for Dr. Gbulie to close JamieLynn which he performed using skin advancement flaps. When it was all done, he stated: “To be able to give this (gift of separation) to the family is an indescribable joy.”

Cautious optimism

Dr. Gbulie said high fives won’t really come until weeks from now. The separation is a major step but is the first part before the recovery truly starts. He will breathe a sigh of relief when the twins go from surviving to thriving.

“The skin is the largest organ in the body and protects our interactions with the environment," Dr. Gbulie said. "It’s really important to get them well healed and a stable wound because without that, more problems could arise such as post-operative infections.”

He feels fortunate for not only the twins’ medical team but Cook Children’s as a whole. 

“There are not many medical centers in the world that have done this procedure," Dr. Gbulie said. "I think this proves that we have a hospital system that literally has every subspecialty and the technology required to pull off something this complex. That’s an amazing achievement and I’m very grateful for that.”

When asked about his work, he stated “I love every bit of what I do, and if given the choice I would always choose to be a plastic surgeon. My training and experience have given me the opportunity to help another set of conjoined twins and I consider that a blessing.”

Background

Dr. Gbulie is a member of the Plastic Surgery Department at Cook Children’s Medical Center. Besides his elective practice, he also provides on-call coverage for facial and hand trauma and has handled many complicated cases including severe dog bite injuries to the face and scalp which require literally putting the child's face back together.

“It's amazing how fulfilling it is to make the child whole and see them smile again, especially when we're able to achieve this with minimal scarring and deformity,” Dr. Gbulie said.

“The Essential Glue”

“My wife Ndidi is an attorney, the love of my life and the essential glue that holds our family together. We're blessed with three wonderful kids – Amaka (14), Sam (11) and Obi (9). During my free time, I love watching soccer and I’m quite sure I’m the biggest Manchester United fan!”

By Jean Yaeger

Marty Knott, D.O., Ph.D. was AmieLynn’s primary surgeon during the historic procedure to separate conjoined twins, AmieLynn and JamieLynn, on Jan. 23, 2023. Although this was his first time separating conjoined twins, Dr. Knott brought experience in operating on chest wall deformities, congenital malformations of the abdomen and chest, abdominal wall defects, tumors, bowels and vascular anomalies. He has worked at Cook Children’s for seven years.

Here are excerpts from a conversation with Dr. Knott prior to the twins’ separation.

It sounds like the area where these girls are joined is where you work quite a bit. Exactly. That's the interesting thing about it.  The actual surgery parts, if you break them down, are things that we do very commonly -- liver surgery and closing abdominal defects in newborn babies. So a lot of the techniques, skills and experience from other places can all be combined into this unique situation. The actual procedures themselves are pretty common.

How did you prepare specifically for this surgery? We have been meeting within our group but also with other subspecialties such as anesthesia and plastic surgery, as well as all of the different components of the operating room team, such as the certified scrub techs, OR nurses and anesthesia techs. It's one of those things where you have a huge team that comes together and everybody plays their role individually to make things happen. And then there's individual preparation by reviewing the scans and charts and the things that they've gone through so far, to just know what things might come up on that day.

Potentially what’s the biggest challenge? The liver separation part's going to be tedious. But the biggest issue is probably going to be getting their abdominal cavities closed and covered safely, because they do have a shared area from their lower sternum down to their belly button area that is open, meaning there's some separation of the muscle and the skin. Just finding effective ways to get that closed once the division has occurred is probably the most hard-to-predict part. For me that feels like the biggest unknown challenge. Everything else is relatively straightforward.

There are different techniques we use. We have babies that are born with other abdominal wall defects that aren't conjoined who still need some sort of either permanent or temporary closure. We'll use some of those techniques we use in other situations for them too. We’re just trying to figure out what's best and preparing for a variety of different options so that once we actually get them separated, we'll be able to know how best to close those abdominal wall defects or those openings so that the intestines, the liver and the heart are all covered safely.

While they're still conjoined, how does everyone who needs to be there fit around the table? There are a lot of people involved, and the table's not very big. To start with, it'll be Dr. Iglesias and I, and then we have two scrub techs that'll be scrubbed into the operation at the beginning. Our plastic surgeons are there as well. It'll be Dr. Iglesias and I until the babies are separated and then we form into two big full teams after that, one for Amie including Drs. Hamner and Hubli, one for Jamie including Drs. Lodwick and Gbulie.  That will be another set of at least four people around the table for each of us.

Someone steps up, someone steps back? Mostly like that, kind of scooting over and leaning. Most of the time we'll stay on our set sides. Typically, Dr. Iglesias will be on the right side and I will be on the left. We'll just work around that and figure out where everybody fits best.

Normally you operate on only one patient at a time and you can position that patient as needed. Can you speak a little bit about the fact that you may not be able to roll Amie the way you want her, because Jamie's there? They've lived most of the time on the sides where, if you're looking from their feet, Amie will be on the left and Jamie will be on the right. That's their baseline or most common position. So that's where we're going to have them during the surgery because that fits best for what they've tolerated so far. There are definitely some limitations. I always say this: In surgery, we try to use other experiences and techniques to fit into unusual situations. There are a lot of different surgeries where positioning has to change throughout the operation for us to be able to get it completed.

We're having to make some modifications within the surgery to where we can move them around a little and use different angles to get portions of the procedure completed safely. We'll use all of our experience and ideas from other situations that are more common to make that happen. But there are definitely some limitations in being able to do things as freely as we want to. Most of what we need to do while they're still joined will be pretty easy to do from the position that is most natural for them.

How long do you think it might take? Longer than expected, just with logistics of everything. Even though we've practiced multiple times, it'll be different on the real day. What I always tell parents when they ask: It'll take as long as it's necessary to get the thing completed safely. I have a timeline in my mind of how things are going to go, but I don't want to put it out there because it doesn't really matter. It's going to take as long as necessary to get them separated and keep them safe the whole time. We're planning for on an all-day event by the time everything's done.

What would you say to your colleagues at Cook Children’s?  This is one of those cool examples where everybody in the hospital gets to come together and participate. A lot of what we do gets kind of divided into little chunks where there's not much interaction between us. This has required a lot of coordination from NICU, to the nurses who know them well, the respiratory therapists, the anesthesiologists, the surgeons, the plastic surgeons and all our staff. Everybody's getting to play a pretty important role, and I hope that everybody sees the importance of what they do on a day-to-day basis.

Anything else? We're all looking forward to it and just asking for prayers that everything goes perfectly and that they recover well.

Jose L. Iglesias, M.D., Medical Director of Pediatric Surgery at Cook Children’s Medical Center, was the lead surgeon during the first separation of conjoined twins, JamieLynn and AmieLynn, in Cook Children's Medical Center's 105-year history.

During his 22 years at Cook Children’s Medical Center, Dr. Iglesias has been instrumental in the advancement of surgical procedures through the use of technology and minimally invasive surgery. He also specializes in chest wall deformities, congenital malformations of the abdomen and chest, vascular anomalies, tumors, gastrointestinal and genitourinary issues.

Here are excerpts from a conversation with Dr. Iglesias prior to the surgery to separate the twins on Jan. 23, 2023.

Did you always want to be a surgeon? My father was a surgeon, and when I was young, he would take me with him to observe patient rounds and surgeries. The thought of one day following in his footsteps was always a dream of mine. I thought working with my hands to help people was awesome. In my General Surgery training, I found my passion to care for the youngest of patients.

Tell me about the growth you have seen in the Cook Children’s Surgery program since your arrival in 2001. Here at Cook Children’s our footprint is constantly evolving. Since my arrival, we have made great strides in laparoscopy and thoracoscopy. Technology and the innovation of video and optics have allowed us to better care for all our patients, even the smallest ones. In addition, we have developed a robust Pectus Program offering the minimally invasive Nuss procedure to our patients with pectus excavatum.

An important part of our program here at Cook Children’s is Quality Improvement. To that end, I helped the hospital become part of the American College of Surgeons National Surgical Quality Improvement Program which measures and tracks the quality of our surgical procedures. This supports our goal to enhance surgical care and patient outcomes.

What is the most rewarding part of your job? For me, it’s the interactions and meaningful relationships that develop because somebody has trusted me with the care of their child. One specific instance involved a mother whose baby was born with a congenital anomaly that required surgical intervention. The mom was so touched by her experience that she ultimately applied for and became a nurse here at Cook Children’s. Another instance that I will never forget involved a young lady with a rare cancer diagnosis. I had the privilege of being her surgeon for several procedures and was involved in her care for over three years. Although she passed, the family invited me to her life celebration where I got to offer my heartfelt condolences to family members in person which meant so much to me. Knowing that I may have an impact on patients and families is both humbling and rewarding, and it is an honor that I will never take for granted.

When did you first meet the twins’ family? A longtime close colleague, and maternal fetal medicine physician, Dr. Bannie Tabor, reached out to me to tell me that he was following a mother with conjoined twins. Surprised by this once-in-a-lifetime phone call, I agreed to meet with mom and dad in our office prenatally. At that time, a fetal MRI showed favorable anatomy for separation.

How long did you plan for surgery to separate the twins? It was an eight-month planning process.

Did you choose the teams for the twins’ separation? Yes. I met with Dr. Chandra Reynolds, lead anesthesiologist, and Valerie Gibbs, director of Perioperative Services, and, together, we assembled the large team consisting of three anesthesiologists, four pediatric surgeons, two plastic surgeons and about a dozen additional OR staff professionals. 

How do you plan for a surgery like this? Months of preparation. Given the complexity of the operation, we held several team meetings and mock-up practice runs to formulate a solid plan knowing that we must prepare for unexpected challenges. We perform complex procedures frequently, but they don’t all have as big of a headline as this one.

What were the next steps? Imaging and growth. We obtained ultrasounds, CT scans, 3D reconstructions and met with radiologists to discuss the anatomy and the neonatologist to address the twins’ development. It was also important to allow the twins to grow to a reasonable size.

What are the plans for surgery? The operative plan involves a step-by-step outline of where to make the incisions in order to optimize the success of closure; we did this with the guidance of our plastic surgeons. Next, we will proceed through the abdominal wall and then on to the division of the liver and lower portion of their sternum, all of which the twins share. We will constantly be assessing any other abnormalities that need to be addressed. Imaging shows the intestines to be separate, but we are prepared for any surprises. Finally, options for abdominal and chest closure are addressed.

What happens once the babies are separated? Once separated, one twin will be transferred to a different bed where teams will split into their green and purple groups and continue operating until completion.

What are the significant risks associated with this surgery? The risks are significant for this type of procedure. Because we are dealing with two abdominal and chest cavities and several vital organs, our main concerns will be bleeding, infection and blood pressure changes. We will also monitor for any heart issues given that their hearts will be in a new position. Closing their abdomens will also be a significant challenge.

Tell me about James and Amanda, the parents of the twins. They are remarkable people. I am amazed by the strength that they have demonstrated throughout this overwhelming process.  They have been eager and willing to learn everything that has been presented to them.

How does it feel that they are entrusting you with their babies? It is always an honor and one that I do not take lightly, when a parent entrusts me with their most prized possession.

What does this surgery mean for you as a pediatric surgeon? The opportunity to separate conjoined twins is an exceptional privilege most pediatric surgeons never get. It is only because we are standing on the shoulders of giants who have trained us, and incredible leaders who have laid the groundwork for this extraordinary institution that we are able to fulfill our Promise.

What does this mean for Cook Children’s? In 105 years, Cook Children’s has never been presented with the opportunity to care for conjoined twins. This will forever be a part of our history, and it is a great honor to all of us that Amanda and James have entrusted us to provide care to AmieLynn and JamieLynn.

What do you anticipate the recovery will look like? The road to recovery will start off slowly. First, we want the large incisions to start healing and for their intestines to start working so that we may feed them. After feeds are started, we will have them work with both dieticians and speech therapists. As time progresses, the twins will likely need physical therapy to address musculoskeletal abnormalities. Other than that, the healthcare team will address any and all issues as they arise. Overall, we are hopeful for a smooth and successful recovery.

What do you think their prognoses will be after surgery? Given their anatomy, I am optimistic that they will recover well and lead happy and healthy lives.

How do you think you will feel once the surgery takes place? Proud of leading a great team to a successful twin separation and humbled by the family who entrusted us. We are a team that has worked countless hours individually, in small departmental groups, multidisciplinary, and now it is time to put all of those pieces together for an operation that will be monumental for all of us here at Cook Children’s Medical Center.

Lastly, I will forever be grateful. Grateful for AmieLynn, JamieLynn, Amanda, James, all of my friends, family and colleagues for supporting and encouraging me throughout this journey. 

Getting to know Dr. Iglesias

Dr. Iglesias is married with two kids. Practicing medicine runs in the family as his wife is a neonatologist, his son will graduate from medical school in June and his daughter is a nurse resident in the NICU at Cook Children’s. “I love having her there.”

Dr. Iglesias started scuba diving during college. His passion was passed onto his son and, together, they earned their master diver certifications. Once or twice a year, they explore new destinations together.

"I moved to Fort Worth and began my career as a Pediatric Surgeon at Cook Children's in 2001 after completing my training at St. Jude & Le Bonheur Children's in Memphis, TN. My wife and two children have loved growing with the city and the medical center ever since. I attended medical school at the University of Texas Southwestern and did my residency training there also, including Parkland and Dallas Children's hospitals. My clinical interests have included minimally invasive surgery, and I was fortunate to be able to expand the technology and procedures during my time at Cook Children's. Other clinical interests include pectus and chest wall deformities, tumors, vascular malformations, and congenital anomalies. Currently, I'm the Medical Director of Pediatric Surgery (since 2014) and previously was Associate Medical Director as well as the Chief of Surgery.

Outside of surgery, I enjoy spending time and traveling with my family. Photography, scuba diving, skiing and performance driving are among my favorite hobbies. My son and I are Master Divers who enjoy exploring new destinations while my daughter and I enjoy perfecting our photography skills with one another."

The medical professionals were separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone worked together until the babies were separated, then each team focused solely on their assigned baby.

We want to acknowledge and celebrate the individuals who successfully performed this historic surgery at Cook Children's! 

• Chandra Reynolds, M.D., lead anesthesiologist
• Cole Carrillo, CRNA, lead CRNA

Team A (JamieLynn)

• Jose Iglesias, M.D., primary surgeon
• Daniel Lodwick, M.D., first assistant
• Ben Gbulie, M.D., plastic surgeon 
• Syma Monzales, RN, Coordinator
• Sarah Shaabani, RN
• Darrell Wortham, CST
• Claudia Hernandez, CST
• Imad Yamout, M.D., anesthesiologist
• Michael Gonzalez, CRNA
• Raul Guerrero, anesthesia technician

Team B (Amie Lynn

• Marty Knott, D.O., primary surgeon
• Chad Hamner, M.D., first assistant
• Eric Hubli, M.D., plastic surgeon
• Sarah Doyle, RN, coordinator
• Kristen Cherry, RN
• Brittney Fuentes, CST
• Tania Gonzales, CST
• Gavin Fine, M.D., anesthesiologist
• Paul Downing, CRNA
• Daniel Jones, anesthesia technician

Team C (backup on standby)

• Hailey Hanson, RN
• Jamie Gomez, RN
• Rosa Leos, RNFA
• Diana Bravo, CST

Neonatologists

• Chad Barber, M.D.
• Mary Frances Lynch, M.D.

Written by Ashley Antle. 

All babies are special, but 16-week-old twin sisters JamieLynn Rae and AmieLynn Rose Finley are making history in one of the most unique ways possible. On Monday, they became the first conjoined twins ever to be separated at Cook Children’s Medical Center in an 11-hour procedure months in the making.

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they are joined at the abdomen and share one or more internal organs. In their case, it’s a liver.

“As far as conjoined twins that reach and stay viable after birth, at least for the first few days, there's really only about five to eight of those per year on the entire planet, so it is very rare,” said Jose Iglesias, M.D., Cook Children’s medical director of pediatric surgery.

Even so, the girls’ story begins like many others.

James Finley and Amanda Arciniega of Saginaw, Texas, wanted to add one more baby to their family of five. The youngest of their three children at the time, 7-year-old James, was elated at the prospect. He’s always wanted a younger sibling and playmate.

Little did any of them know — or expect —their hope for one more would become a gift of two.

“She said that's the baby's head,” Finley said, describing how their obstetrician shared the unexpected news of twins at their 10-week ultrasound. “I was like, ‘What is that?’ and she said, ‘That's the other baby's head.’ And I was like, ‘What?’”

Double Blessing

The revelation of the twins' connection came early in the pregnancy. The 10-week ultrasound showed the babies had little to no separation between them. Images taken at the following appointment confirmed the babies were conjoined. Suddenly, the family’s excitement for welcoming two new additions was covered by a cloud of questions, uncertainty and fear. 

“I would not have thought in a million years that I would have twins,” Arciniega said. “And then conjoined twins on top of that.”

In the months that followed Arciniega enjoyed an easy and uncomplicated pregnancy, save for the many appointments with specialists across the state to determine who best to deliver the twins and what hospital was most capable to care for them after birth.

The couple settled on maternal-fetal specialist Bannie Tabor, M.D., whose practice is located at Texas Health Harris Methodist Hospital Fort Worth in Fort Worth, Texas. He is also the medical director for Cook Children’s Fetal Center. In his 32-year career of caring for high-risk pregnancies, Dr. Tabor has delivered more than 5,000 babies.

Soon after taking Arciniega and her unborn babies as patients, Dr. Tabor reached out to Dr. Iglesias, a longtime colleague, to review the case and discuss the possibility of separation.

“It was a big surprise when I got the first phone call from Dr. Tabor saying he had conjoined twins that he was starting to follow,” Dr. Iglesias said. “At that time they really didn't know the babies’ anatomy specifically. So I said there is a big range of possibilities and we need to see what happened with the initial MRI to make some plans from there.”

Many conjoined twins die in utero or do not survive long after birth because of the nature of their joining and the organs they share. But scans showed JamieLynn and AmieLynn each had their own heart and heart sac, increasing their chance of survival and making them candidates for future separation.

“I think the key thing when we first met the family was they had a lot of anxiety about the situation, what the options were and what they could do,” Dr. Tabor said. “I think I gave them the confidence that, while I could not promise everything would work out, we would do everything that we could and, with everybody involved — from me to the neonatologists to the surgeons — they were in the right place.”

Family Ties

Texas Health Harris Methodist Hospital Fort Worth and Cook Children’s Medical Center have a long history of physical and professional collaboration. Both facilities are located in the heart of Fort Worth’s Medical District along a historical stretch of Pennsylvania Avenue that cattle barons once called home. The two facilities are joined by a skywalk and, in Cook Children’s early days, even shared some utilities. Local neonatologists practice at both hospitals’ neonatal intensive care units (NICUs) and many Texas Health Fort Worth obstetricians, including Dr. Tabor, regularly consult with Cook Children’s pediatric specialists.

“The working relationship between the whole team, that's made possible by the close relationship of the hospitals, allows us to be the center that can provide this type of highly advanced service to North Texas so families don’t have to go halfway across the state or halfway across the country or even to Dallas for care,” Dr. Tabor said.

Early in the pregnancy, Finley and Arciniega also consulted Ben Gbulie, M.D., F.A.C.S, of Posh Plastic and Reconstructive Surgery in Mansfield, Texas, and a member of the plastic surgery faculty at Cook Children’s. They learned of Dr. Gbulie through Finley's mother, whose friend told her of a local plastic surgeon with experience in multiple conjoined twin separation surgeries.

After long discussions with the couple, he pointed them toward Cook Children’s Medical Center.

“I explained to them that traveling for surgery is not a problem, and a lot of people do that,” Dr. Gbulie said. “But if you can get the same quality of care where you live, it's always better because you want to be able to have long-term follow-up. While this is a major, complex operation, it is not something that is beyond what I felt Cook Children’s could do.”

Finley and Arciniega were relieved to hear Dr. Gbulie’s recommendation. The family lives less than 30 minutes from Cook Children’s. To know that they could stay close to home, close to their other children and close to their support system was comforting.

Cook Children’s was also familiar. Two of the couple’s older children have received care at the medical center. Their daughter, Aaliyah, 13, spent weeks in Cook Children’s pediatric intensive care unit (PICU) when she was 7 for a nearly deadly bacterial infection called Bartonella henselae. It’s commonly known as cat scratch fever and can be acquired when scratched by a cat. Big brother, James, is a frequent visitor to Cook Children’s as he manages sickle cell disease. 

“Sometimes we come in here and I’m like, ‘Hey, I’ve seen you before,’ to a doctor that has been around our son or Aaliyah, and they’re like, ‘Hey, I’ve noticed you, too,’” Arciniega said. “So it’s kind of like we’re family here.”

“Everybody’s always treated us nice,” Finley added. “It takes a lot of pressure and anxiety off when you know your kid is going to be taken care of.”

Delivery Day

As the babies grew in utero, Dr. Tabor closely monitored their progress and, together with a team of doctors from both hospitals, prepared a delivery and post-natal game plan. During Arciniega’s third trimester, Dr. Tabor became concerned with the slow growth rate of the babies and determined it was best to deliver them early.

On Oct. 3, 2022, at 34 weeks gestation, JamieLynn and AmieLynn were delivered via C-section at 10:40 a.m. at Texas Health Fort Worth. Arciniega required a vertical incision over the traditional horizontal approach to delivering the babies safely. Both weighed 4 pounds, 7.8 ounces. JamieLynn was the longer of the two, measuring 16.9 inches to AmieLynn’s 16.5 inches.

“It wasn’t an easy delivery, but we made it look easy,” Dr. Tabor said reflecting on that day.

Upon delivery, neonatologists Chad Barber, M.D. and Mary Frances Lynch, M.D., took over the babies’ care in Texas Health Fort Worth’s NICU. Like with any set of identical twins, telling them apart can be tricky and, if mistaken, dangerous in the hospital setting. To help keep their identities straight, Dr. Barber and Dr. Lynch chose a favored color for each girl, purple for JamieLynn and green for AmieLynn, and used Sharpies to mark each baby’s color on one of their nails.

After a month, the girls were transferred to the NICU at Cook Children’s Medical Center where they remain today, still under the care of Dr. Barber and Dr. Lynch who practice at both Texas Health Fort Worth and Cook Children’s. The girls’ color codes followed them there, too, and are used as an additional layer of safety when identifying the babies for medication administration, feedings and individual care needs. They even inspired the purple and green crayon costumes the girls sported for Halloween.

Home Away From Home

In the NICU room, which has been their babies’ home since November 2022, Finley and Arciniega attend to their infants like many other parents of twins — together. It takes two to pick them up, especially considering how they must navigate the tubes and wires that monitor the babies’ vitals and deliver nutritional support. Scripted signs handmade by the NICU nurses hang on the wall, making their private NICU room look a little more like a sweetly appointed home nursery.

The girls lay face-to-face on their sides, carefully and frequently repositioned from one end of their shared crib to the other in order to give equal time on each side. Although currently the smaller of the two, JamieLynn is wide-eyed and alert. Her gaze fixes on and follows those that enter the room. She’s feisty and makes sure everyone knows when she is unhappy. Sister, AmieLynn, is more reserved. She’s often the calmer and more chill of the two.

Together, the beloved girls evoke the attention of their parents who make sure there are enough cuddles and kisses to go around, especially from their protective dad. He’s already planning ahead for the days when young men come calling for any one of his three daughters.

“Every window will have a rose bush underneath,” Finley said with a laugh, but only half kidding.

Their days in the NICU are filled with feedings, naps, diaper changes, baths and a number of therapies to help with mobility, strength and eating. The girls respond especially well to music therapy and love it when Grandma sings to them during her visits. Their siblings, brother Isaiah, 15, Aaliyah and James, visit regularly, too. James loves to entertain them, and the girls respond with delight.

Their face-to-face positioning makes feedings and diaper changes a challenge, but nurses have developed creative workarounds to accomplish both. Most of the time they can be bottle-fed one at a time by a single caregiver, with AmieLynn often waiting patiently until sister is satisfied. When patience runs out, feeding is a two-person job.

The older they get, the more they move their limbs. It’s not uncommon for one to unintentionally punch and sometimes anger the other. The girls wear mittens to protect each other from scratches.

All the while doctors monitor their progress, study their anatomy and plan for the enormous task of separation. 

Journey to Separation

The timing of conjoined twin division varies from case to case and primarily depends on how complicated the anatomy is. In the girls’ case, their anatomy and growth support a surgery date sooner rather than later.

While the girls are thriving in the NICU, they are not growing at the same rate, partly because they share some blood supply.

“One is stealing groceries from the other, basically,” Dr. Barber said.

AmieLynn is beginning to develop scoliosis. Feedings are becoming more and more challenging with their size, mobility and face-to-face proximity. While separate, their hearts are exceedingly close together and grow ever closer as the girls age.

“They're pretty much at their maximal, I like to say, baby stretchability,” Dr. Iglesias said. “So their skin is pretty stretchy. Their abdominal walls are stretchy. We've got the benefits of using that. By separating early, they're not going to be as used to the loss of having essentially part of you that is different, so hopefully, that transition will be better. There are not very many more benefits to waiting longer versus doing it now.” 

At nearly 4-months-old, the time is right.

It’s taken months of planning and collaboration. Countless hours have been spent building a comprehensive medical team, studying scans of the girls, building models of their anatomy, mapping out potential surgical solutions, identifying the what-ifs, troubleshooting potential problems, inventorying equipment needed to accomplish the surgery, preparing the operating room (OR) and rehearsing the carefully choreographed surgical production. Dr. Barber estimates there have been at least 100 medical professionals, from physicians to nurses to therapists and other clinical specialists, intimately involved in the girls’ care and surgical planning.

“I think the teamwork is a great point to bring up because it's everything,” Dr. Iglesias said. “It takes a huge team to get all of this working as smoothly as you can make it, given the unknowns that we'll have. Having everybody open and honest talking to each other regardless of their position, that's the definition of teamwork.”

The surgery comes with great risk and a number of unknowns. Because they must dissect the liver, an extremely vascular organ, bleeding is a concern. A significant risk of infection also exists, for which the twins will be monitored weeks into recovery. Doctors are unsure of how the babies’ hearts will respond to their new anatomic position as the girls lay on their backs for the first time in their lives. Then there are questions about how to best close the abdominal wall, many of which can not be fully answered until separation is accomplished. The girls may require additional surgeries to complete closure and reconstruction.

“In order to prepare for this, it's a lot of practice, practice, practice and more practice, trying to really think of every possible scenario so that we're not surprised by anything,” Dr. Barber said. “There's always going to be unexpected things, but if you're prepared for the worst possibilities and the most unlikely outcomes, then you can hopefully not get too caught off guard.”

For their part, mom and dad pray, leaning on the same faith in God that carried them through when their older children faced medical crises.

Separation Day

Monday, Jan. 23, 2023. JamieLynn and AmieLynn are ready for their big day. Thanks to their NICU nurse, they’re sporting fresh mani-pedis in their signature purple and green to help identify them in the OR.

Before the sun rises, family and members of the medical team gather in the girls’ NICU room. It’s calm and quiet as mom and dad steal a few final pre-surgery kisses from their babies. Grandma sings softly. Others pray. The girls are awake, content and comfortable. Just before 7:30 a.m., they begin their journey to the OR.

Inside the OR is a sea of medical professionals: three anesthesiologists, four pediatric surgeons, two plastic surgeons and about a dozen other clinical professionals. They are separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone will work together until the babies are separated, then each team will focus solely on their assigned baby.

“The reason that's important is because you need focus,” Dr. Gbulie said. “You want to minimize room for errors and the risk of confusion. So little things like color-coding everyone and everything minimizes the risk of giving the wrong medication on either side. It's truly a community effort that involves a multi-specialty team.”

The first few hours involve inserting central lines for delivering anesthesia and placing breathing tubes. Then, sedation begins. The process is slow and methodical.

“When we're talking about taking care of conjoined twins compared to taking care of just a single baby, one of the biggest questions is what is shared, and there does seem to be some shared circulation between the girls,” said Chandra Reynolds, M.D., the lead Cook Children’s anesthesiologist on the surgical team. “What is the response going to be for baby B when we give baby A certain medication? It’s a very slow and stepwise approach until we better understand what happens to one when the other receives medication. The key thing is to give one baby a certain amount of medication, watch and wait for a while to see how things are going and, based on that response, we can give her sister a certain amount as well.”

Once the girls are safely asleep, the surgeons begin marking incision lines. At 12:28 p.m., the separation officially begins. Guided by plastic surgeons, they are careful to make cuts that give the girls’ abdomens the best chance of closure.

First, surgeons open the abdominal wall and dissect the lower part of the sternum and the liver. A little under two hours in, the family receives word that the girls’ shared liver is separated. The private waiting area where the family anxiously awaits news of progress erupts with cheers. Finley and Arciniega embrace.

Surgeons painstakingly work layer-by-intricate-layer until they reach the backside of the abdominal wall where they complete the dissection.

The update everyone’s been waiting for comes at 3 p.m. JamieLynn and AmieLynn are officially separated and on their backs. Tears and shouts of praise flow from family and friends in the room. Their relief is palpable.

“I want to tell you that all of the people in there taking care of them cheered even louder than this,” said the nurse delivering the news, followed by laughter from the family.

There is still a long way to go.

“Once the babies are finally physically separated, then we have to initially look for other additional anomalies and see if there is anything else going on,” Dr. Iglesias said. “We transfer one baby to the other bed where one surgeon will follow and an additional surgeon will pick up with the other and continue to do the evaluation.”

Once each baby is ready for closure, their assigned pediatric surgeons, Dr. Iglesias for JamieLynn and Marty Knott, D.O, for AmieLynn, begin closing the chest and abdomen. Plastic surgeons Dr. Gbulie and Eric Hubli, M.D., Cook Children’s Surgeon in Chief and medical director of craniofacial and cleft surgery, assist with skin closure.

By 6 p.m., the surgery is complete. This time Dr. Iglesias, Dr. Gbulie and Dr. Knott deliver the news to the family.

“We did it,” Finley said in response. “I don’t know what I did, but we did it.”

To this Dr. Iglesias replies, “You trusted us. That’s what you did.”

All the while, neonatologists Dr. Barber and Dr. Lynch stand by for the girls’ post-surgery return to the NICU.

One by one, the sisters exit the OR on their way back to their familiar home away from home in the NICU. For the first time in their lives, they lay on their backs, each in their own crib. The family gets a momentary glimpse from afar as the girls are wheeled past the waiting room, and cheer them on as they pass. About an hour later, mom and dad are able to join the girls in the NICU.

The first look at their twins in separate beds brings a wave of emotion. For the first time, they must divide their attention between the two. They start with JamieLynn. Arciniega places her pinky finger in her baby’s hand.

“It’s OK, Mommy’s here,” she whispers.

Then to AmieLynn. Finley gushes about her strength and how proud he is of his quiet fighter.

It’s a monumental moment, but none of the physicians are ready to say “mission accomplished.”

“The challenges the girls may face after surgery are very difficult to fully prepare for,” Dr. Lynch explained. “We do still have some unknowns as far as how their shared vasculature and their shared anatomy and positioning over these last three months will affect them. As Dr. Barber alluded to earlier, we have to prepare for many different scenarios. The things that will worry us and that we’ll be the most focused on in the first few days are going to be breathing support and pain control. As you can imagine, this is an incredibly big surgery and pain control will be at the top of our list.” 

They’ll be watching for signs of infection, too.

“The soft tissue usually swells over the first two to three days,” Dr. Gbulie said. “If you get through those two to three days, you're usually OK. That being said, we are going to be going through potentially some bowel and definitely the liver, so there is a relatively higher risk of wound infection and that usually shows up at about five to 10 days.”

Road to Recovery

Recovery is best described as slow.

“I'm sure mom and dad are going to think we're moving in slow motion,” Dr. Iglesias said. “The first steps are going to be healing of the very large incision that is required to separate them. We have to wait for their gut to start to work before we start allowing nutrition to move through their intestines. Some of these things may require staged procedures so the family's ready that the abdominal closure may take more than one operation. We're hopeful it won’t, but that's a possibility.”

They’ll need extensive rehabilitation, too, which will include nutritionists, physical therapists, occupational therapists, speech therapists and more.

Doctors say they’re optimistic but will continue to hold their collective breath until they are waving goodbye to the girls as they leave Cook Children’s for their first ride home.

“I'm very hopeful that they're going to have a good recovery and lead healthy lives in the future,” Dr. Iglesias said. “They're going to have a bit of a ramp up from the recovery, but I think they're going to be able to get there eventually, and very close to normal if not completely normal.”

Until that chapter of this story begins, JamieLynn’s sassy spirit and AmieLynn’s sweet smile remain on full display as their NICU team continues to care for their daily medical, physical and emotional needs. This time, together, but separate.

Cook Children’s is a not-for-profit organization. Donations to Cook Children’s Health Foundation allow us to care for our families when and how they need us. Give today to support patient families like Jamie and Amie. Go here. To donate items at the Medical Center for Jamie and Amie, email AandJ@cookchildrens.org.

The nearly 40,000 babies born each year with congenital heart disease (CHD), or birth defects of the heart, face a lifetime of surgeries and procedures to keep their hearts pumping properly. But a new, first-of-its-kind, non-surgical treatment now offered at Cook Children’s Medical Center is reducing the number of open-heart surgeries needed for some teenage and adult CHD patients.

Micah Rucker, 29, is one of them. He is the first patient at Cook Children’s to receive the Harmony™ Transcatheter Pulmonary Valve (TPV). It is the first catheter-based valve delivery system designed to treat a leaky native pulmonary valve approved for use in the United States by the Food and Drug Administration (FDA).

Transcatheter balloon expandable valves have been used in patients with previously placed surgical conduits, which is a prosthetic connection between the right ventricle and pulmonary artery. The Harmony TPV is the first valve designed specifically for those patients without a conduit who require pulmonary valve replacement.

In Micah's case, his pulmonary valve did not form correctly. It remained sealed and blocked the blood flow from the heart into the lungs. By the time he was 2 years old, he had already had two open-heart surgeries—one to open his sealed valve and another to expand the size of the right side of his heart. Doctors fully anticipated he’d need another by the time he was a teen. But Micah defied the odds, which bought enough time for technological advances to turn what could once only be done with open-heart surgery into a minimally invasive procedure.

“His father and I were just hoping that by the time he needed a new valve that the technology would get to the point where he wouldn't need open-heart surgery again,” Karen said. “Because we just really didn't want that for him, especially when he was old enough to remember it. He doesn’t really remember his surgeries when he was a baby.

A leaky pulmonary valve, also known as pulmonary regurgitation, allows blood to backflow into the heart’s right ventricle instead of into the pulmonary artery where it travels to the lungs for oxygen. It’s common for children with CHD to have a leaky valve as a result of their defect or previous surgeries.

“Leaking of a pulmonary valve in a child is not usually critical in the newborn or childhood years,” said Dennis VanLoozen, M.D., an interventional cardiologist at Cook Children’s. “They tolerate that quite well initially. So we often trade that early in life in order to relieve an obstruction. But over 10, 15, 20 years of that valve leaking, that’s when we start to see the effects on the heart where we know it is time to place a competent valve.”

Open heart surgery comes with a large incision in the chest wall and requires a multi-day stay in the hospital. Recovery can be long and painful. The Harmony TPV gives patients a welcome alternative.

The procedure is performed by an interventional cardiologist in the cardiac catheterization lab. During placement, a catheter encasing the artificial heart valve is inserted into a vein through a small incision in the leg or neck. It is guided through the vein into the heart’s right ventricle outflow tract where blood passes from the heart into the pulmonary artery. Once in position, the valve is deployed, expands to fit the size of the outflow tract and immediately begins directing blood flow from the heart into the blood vessels connected to the lungs. The catheter is removed through the same vein in which it was inserted.

Patients with right side heart defects typically have irregular outflow tracts that are larger in diameter. The self-expanding aspect of the valve can treat a much wider size range and provides a better fit than previous generations of valves.

The procedure takes about two hours. With just a small incision to insert the catheter, post-op pain is minimal. Most patients are able to go home the next day and can return to their normal daily activities within a week.

“How quickly people recover and bounce back is really the exciting part of doing these in the cath lab,” Dr. VanLoozen said.

Although Cook Children’s is a pediatric medical center, most of the candidates for this procedure are teenagers or adults, like Micah.

“The tricky part about CHD is just because you turn 18 doesn’t mean we are done with you,” Dr. VanLoozen said. “Congenital heart disease is a special thing where you stick with the pediatric side of care with physicians specialized in treating birth defects in adults. Cook Children’s has a program designed just for that.”

It’s called the Adult Congenital Heart Disease program and offers ongoing care for adults with CHD. Scott Pilgrim, M.D., is the program’s medical director.

“I am very excited about this new development in transcatheter pulmonary valve replacement technology and having the ability to do these procedures at Cook Children’s,” Dr. Pilgrim said. “The prospect of another open-heart surgery is sometimes very overwhelming for the adult with congenital heart disease, as many have had multiple prior surgeries already. The Harmony valve offers a relatively non-invasive option to a much wider group of patients who were previously determined to not be candidates for a transcatheter approach. With a recovery time of only one overnight stay, the Harmony valve is a very attractive option, with many patients returning to work within a few days.”

Today, Micah is home where he lives with his mother and grandmother. He still has a few weeks until he is cleared to exercise and ride his bike, but he’s back to doing other things he loves, like helping to care for his grandmother, playing video games, writing and cooking. Steak is his specialty, much to his mother’s delight.

“I have more energy than I used to have, and I’m breathing a little better than I used to,” Micah said.

He and his mom are happy to have avoided another painful surgery. Most of all, they’re grateful for the technological advances that made it possible.

Her head and arms lift. Her eyes open, turned to the side. Her body goes rigid and she loses bladder control. Sometimes she moans; usually the episodes unfold silently. The next morning, Baylie doesn’t remember.

“It’s very tough to watch. It never gets easy,” said her mom, Brandi Williams. “Most of the time she just goes right back to sleep.”

Diagnosed at age 2, Baylie is among the estimated 12% of epilepsy patients who experience nighttime seizures. An electroencephalogram (EEG) monitoring study at the epilepsy monitoring unit at Cook Children’s found that her seizures occur six or seven times a night – even more than her parents initially realized.

Dave Shahani, M.D. an epileptologist at Cook Children’s, explained that nocturnal seizures cause special concern because of the risk that a child in the throes of a seizure might suffocate on fluffy bedding or soft toys.

“It’s not that they are any different from other seizures per se, but we tend to worry about them more,” he said. Seizures while sleeping are less likely to be witnessed by a parent, he pointed out. “Any number of nighttime seizures is a high number. Even one a month is a high number.”

The U.S. Centers for Disease Control and Prevention estimates that epilepsy affects 470,000 children nationwide. Irregular electrical activity in the brain characterizes this chronic disorder, which encompasses a wide variety of seizure types. Symptoms of epilepsy can look very different in different people.

Someone having a seizure might collapse, twitch or spasm, stiffen, blink rapidly, stare into space, or lose consciousness, for instance. Nighttime seizures pose the added challenge of sleep disruption. And studies have indicated a higher risk for Sudden Unexplained Death in Epilepsy (SUDEP) during sleep. SUDEP is poorly understood but suspected to involve cardiac or respiratory complications.

Damian Campbell, D.O., a pediatric neurologist at Cook Children’s in Prosper, said Baylie’s frequent and consistent sleeping seizures stand out as “the most extreme case that I’ve experienced.” But he’s encouraged about the prospect of surgically correcting her epilepsy.

Doctors think Baylie’s seizures originate from the right frontal lobe of her brain due to focal cortical dysplasia, a jumbling of the neuron cells as her brain developed before birth. In a surgical procedure scheduled for December, her medical team expects to pinpoint the abnormality’s exact location – and eventually reduce or even eliminate her seizures.

In November, as we observe Epilepsy Awareness Month, we’re highlighting Baylie’s story to illustrate the complexity of epilepsy, to share hope, and to feature the work of the neuroscience experts at Cook Children’s who treat the seizure disorders of more than 13,000 infants and children per year.

Starting to Find Answers

Baylie loves to sing and dance, can charm someone she’s just met, and in her dad’s words “she’s amazing.” So the discovery of their daughter’s epilepsy several years ago came as a surprise to Jabyrie and Brandi Williams. None of Baylie’s five older siblings has seizures. And judging just by appearance, nothing seemed obviously wrong with the toddler. But the family noticed occasional behavior they thought was unusual.

“Every once in awhile she would start staring off into space and then she would start laughing after she came out of it. We would snap our fingers and say ‘Baylie, Baylie,’ and she wouldn’t say anything,” Brandi remembered.

“We didn’t think it was anything at first,” Jabyrie said. “She would look around and laugh, and we thought it was an imaginary friend.” The Williamses referred to these strange bouts as “blanks.”

Then they picked up on other odd signs… dizziness after her blank spells, dark circles under her eyes, and complaints about feeling tired. She struggled to follow directions at home. At gymnastics, she couldn’t focus enough to complete a step-by-step routine. “Walk the beam and then do a handstand and do a cartwheel,” Brandi said. “Her mind couldn’t process doing those things in a certain order.”

After a referral from a pediatrician, Baylie underwent various tests, including an MRI, spinal tap and electroencephalogram (EEG). In 2020, they sought a second opinion at Cook Children’s, where she came under the care of both Dr. Campbell and Dr. Shahani. Further tests showed that Baylie’s “blanks” and trouble concentrating stemmed from the disorganized layering of neuron cells on one side of her brain.

She currently takes two medications that mostly control her daytime seizures. At full-day pre-kindergarten she hasn’t had a seizure during nap time. But a stressful day, Brandi said, might trigger a breakthrough seizure during waking hours. And the nighttime seizures still happen regularly.

“Focal cortical dysplasia can’t be fixed with medication. You can suppress the seizures, but you can’t fix anything. Surgery is the only thing that could fix it,” Brandi said.

Dr. Campbell characterized Baylie as a good candidate for epilepsy surgery. He cited the higher likelihood for surgical success in patients whose seizures onset lies in just one part of the brain instead of generalized in multiple locations. A lesion in Baylie’s right frontal lobe “as a result of being malformed, doesn’t respect the organization of how the brain produces electricity,” Dr. Campbell said.

Dr. Shahani concurred in the assessment of good surgical potential. The four medications Baylie tried didn’t stop her nighttime seizures. “Without any change in her treatment plan, she will continue to have seizures for the rest of her life,” he said.

Next Step, Surgery

A stereo EEG is scheduled for Dec. 13 to precisely locate the source of her brain’s erratic electrical waves. Daniel Hansen, M.D. a neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center, will make small incisions in Baylie’s scalp and skull to place electrodes that record brain activity. Those findings could pave the way next spring for either a resection (removal of a small amount of brain tissue), or thermal ablation (a probe that uses heat to destroy the area causing the seizures). Cook Children’s performs more than 30-40 epilepsy surgeries annually.

The odds are stacked in Baylie’s favor. Dr. Shahani explained that the target area doesn’t involve critical parts of her brain that control language or motor skills. ‘She presents as a very good candidate for potential seizure freedom,” he said.

For epilepsy patients whose seizures resist medication, alternatives may include dietary therapy or implanted devices such as vagus nerve stimulators. “Early recognition and early treatment always lead to better outcomes,” Dr. Shahani said. And from Dr. Campbell: “Earlier detection is better because uncontrolled seizures can affect patients cognitively over time.”

They encouraged parents to call a neurologist or epileptologist if they suspect their child might be having seizures. Videos can be a valuable diagnostic tool by capturing a recording of the twitches, spasms, “blanks” or other concerns. Seizures often go undiagnosed or misdiagnosed because they occur so uniquely in each person, Dr. Shahani said.

“It makes it challenging and extremely rewarding to help identify what is a seizure. Parents are our greatest asset because they know their child the best.”

Back in Rowlett, the Williams family keeps Baylie on an evening routine – dinner, medicine, bath, in bed by 8:30pm. She sleeps in her own bedroom, protected from falls by a guard around the edge of her mattress. A camera keeps watch.

“In the beginning she was sleeping with us because we were nervous,’ her mom said. “But we had to come to the agreement that we have to let her be a kid.”

Brandi and Jabyrie expressed optimism that this treatment path will put an end to Baylie’s nighttime seizures and allow her to come off the meds. They urged other parents to know that the signs of epilepsy can be silent and easy to miss. Their advice? Ask questions, pay attention to seizure triggers, and advocate for your child.

“We want answers, and that’s what Cook Children’s gave us,” Brandi said. “If we never would have switched to Cook Children’s we just would have been chasing seizures for the rest of her life. We want her to be as independent and normal as possible. Being on medication for the rest of her life just wasn’t what we wanted for her, if we could help it.”

Left uncontrolled over time, seizures can cause buildup of brain scarring, Dr. Campbell said. Nighttime occurrence interferes with the restorative sleep that children need. He applauded the Williamses for their willingness to follow the recommendation for surgery to stop Baylie’s seizures.

“I hope that this article helps other families with the expected fear with hearing someone say ‘Maybe we should consider surgery,’” Dr. Campbell said. “It is a scary conversation. But I think over time we’ve become optimistic that her story will make it less anxiety-producing for families.”

Luke Waggoner’s epileptic seizures were getting worse, striking multiple times a day sometimes in back-to-back clusters that sent him to the hospital.

The seizures caused the 13-year-old Arlington boy to jerk or jump uncontrollably. He might fall backward so forcefully that he’d bruise. Other seizures left Luke mute, confused and unresponsive.

Luke has Lennox-Gastaut syndrome, a rare type of difficult-to-control epilepsy. His seizures are medically refractory, having failed many medications and other non-pharmacological treatments. Even with five different medications taken multiple times daily, Luke was still having breakthrough seizures, the erratic misfires between neurons in his brain. These seizures often resulted in trips to the emergency room and frequent admissions to the hospital. The medications and frequent seizures also make it hard for him to think and speak clearly.

In the midst of the setbacks came a new treatment option: deep brain stimulation (DBS), a surgical therapy that utilizes electrodes, wires and a generator to modulate the brain’s abnormal electrical impulses. The movement disorders team at Cook Children’s has been utilizing DBS for dystonia since 2007 in children as young as 7 years of age. DBS was recently approved by the U.S. Food and Drug Administration (FDA) for adult patients with Lennox-Gastaut syndrome.

Luke was facing the prospect of undergoing a corpus callosotomy for his epilepsy. This irreversible neurosurgical procedure permanently severs most of the connections between the two halves of the brain to prevent drop seizures, the most dangerous and disabling seizures often seen in Lennox-Gastaut syndrome. Based on extensive experience with pediatric DBS, the movement disorders and epilepsy teams collaborated with Luke’s family about the potential to offer DBS to Luke as an alternative to callosotomy. If the DBS did not work, callosotomy remained an option.

After much discussion and planning, the decision was made to implant temporary electrodes in two sites on each side of Luke’s brain to assess the impact on his seizures and potential unwanted effects. In April 2021, Luke had the temporary leads implanted. After several days of continuous monitoring on the specialized epilepsy unit trying different stimulation settings, the sites for permanent leads were chosen in consultation with Luke and his family. A detailed proposal including the data from the trial was used to get insurance approval for the placement of DBS.

Then in a two-part landmark surgery at Cook Children’s – on July 8, when electrodes were implanted in his thalamus; and on July 14, when wires were placed through his neck to the generator in his abdomen – Luke became the first pediatric patient in North Texas to undergo DBS for intractable epilepsy since the FDA approved the treatment. He also became the first child in the United States to receive the newly approved sensing lead technology DBS system for epilepsy.

“Deciding to do the DBS and for Luke to be the first pediatric patient at Cook Children’s for epilepsy was a very difficult decision, and we did not take it lightly,” said his mom, Ami Waggoner. “We just knew we had to do something to try to help him.”

Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s, expressed optimism about the potential to mitigate Luke’s seizures for years ahead. Other desired outcomes from the ongoing brain stimulation? Better cognitive function, fewer meds, greater independence and a more normal lifestyle.

“Our hope is that not only will this immediately start to show improvement in his seizures, but give him a chance to have a better quality of life, to be able to go back to school in person, to be able to go outside and not worry about falling down or having a seizure, and to be able to taper off of some of his medications,” Dr. Keator said.

Since 2007, the Jane and John Justin Neurosciences Center at Cook Children’s has established a record of excellence in deep brain stimulation, providing the surgical therapy to almost 150 patients with a movement disorder called dystonia, currently FDA-approved for pediatrics. Luke is a pioneer in DBS because of his underlying condition … epilepsy rather than dystonia.

Ami and Tim Waggoner said their son already has made big strides since his two DBS surgeries in July. His seizure count is down from the pre-surgery norm of five to 10 per day, she said, and the seizures that still occur aren’t the dangerous variety that requires additional “rescue” medications. Luke is able to read, play with Legos and his beloved trains, and go for short trips in the car. He started weaning off one of the drugs he takes. They are amazed at the change.

“You can just look in his eyes and see he’s more with it,’’ Ami said. “This is all really, really exciting. He knows he’s feeling better.” And from Tim: “I’m seeing more energy, fewer seizures, clearer speech and he is able to do more! It is just amazing the difference in just over a month since turning on the generator.” 

Let’s take a closer look at epilepsy facts, the precision involved in deep brain stimulation, and the route Luke took to becoming the first patient to undergo this new treatment for childhood epilepsy.

Epilepsy explained

The U.S. Centers for Disease Control and Prevention estimates that 3.4 million people nationwide have epilepsy, including 470,000 children. There is no cure and often no identifiable cause. Epilepsy is a chronic disorder that results from sudden intense bursts of electrical activity in the brain, manifesting a range of seizure types.

Someone who’s having a seizure might collapse, twitch or spasm, stiffen, blink rapidly, stare blankly, or lose consciousness depending on the type. Medication successfully controls the seizures in up to 80% of children with epilepsy.

Luke was diagnosed at age 5 with generalized epilepsy, which affects both hemispheres of his brain. Big sister Lexi didn’t know what was happening when she witnessed the first seizure.

“He couldn't hear me. And he started walking in a circle and then he just fell over and turned blue. Seeing that freaked me out,” Lexi remembered. “The first few years were really hard for me to understand and get used to it. But now it's to the point where it's just a part of our everyday lives.”

Medications helped at first, his mom said, but the seizures started getting more dangerous and debilitating about three years ago. Ami, who is a nurse, could administer the rescue medications at home when the seizures got especially bad. But even then, about twice a month Luke required hospitalization and intravenous therapies to stop the back-to-back clusters.

Dr. Keator said electroencephalography on Luke found the two distinct patterns of brain waves indicative of Lennox-Gastaut syndrome, (slow spike-and-wave complex and generalized paroxysmal fast activity). A vagus nerve stimulator, which uses a pacemaker-like device implanted in his chest, worked for a while for Luke, but the seizures and hospital stays kept recurring.

Game-changer potential

Warren Marks, M.D., director of the Movement Disorders Program at Cook Children’s, visited Luke’s hospital room in February 2021. Dr. Marks mentioned the prospect of deep brain stimulation, which had been approved by the FDA since 2018 for adults with epilepsy. Cook Children’s anticipated that the FDA’s green light for DBS in epileptic children was on the horizon, and Luke seemed like an ideal candidate.

“Dr. Marks just really believed he could help Luke. He gave us a spark of hope,” Ami recounted. “We were on board from the beginning because of the trust I have in the physicians and Luke’s neurology team. They're just amazing. They have never, ever given up.”

Dr. Marks explained that DBS sends small electrical impulses to targeted areas of the brain to alter the abnormal movements seen in dystonia as well as tremors and Parkinson’s disease. Results were encouraging in the almost 150 dystonia patients who underwent DBS in the past 14 years at Cook Children’s. Dr. Marks thought the therapy held promise for epilepsy patients too.

Collaboration between the Cook Children’s movement disorders and epilepsy teams had already been underway to adapt technology and share expertise, Dr. Marks said. The next step was a weeklong trial in April to gather data on Luke’s tolerance for different electrical amplitudes. And the doctors needed to know exactly where to implant the DBS devices.

“We recorded and stimulated different places in the brain to decide which seemed to be beneficial, but also which didn’t cause him unwanted side effects,” Dr. Marks said. “When you stimulate the brain in these areas, sometimes you get thing that you don’t want. We were trying to find one target that would give us the best chance of success.”

Not only did the April testing phase produce essential data, but during that practice run Luke spoke more clearly and felt better than he had in years, his mom said. So DBS was scheduled for July. John Honeycutt, M.D., medical director of Neurosurgery at Cook Children’s, is the surgeon who implanted several electrodes bilaterally in the centromedian nucleus of Luke’s thalamus, the relay center for transmitting signals in the brain.

The DBS system consists of three main components:

• Leads (pronounced “leeds”) – tiny electrodes embedded deep in the brain to deliver the electricity directly to the target area. They’re held in place by caps screwed into the skull.
• Generator – a mini-computer under the skin of the chest (the abdomen, in Luke’s case). Wires run through the neck to connect leads to a generator. In some cases, the battery is rechargeable.
• Programmer – a tablet that talks to the generator, regulating the strength and frequency of electrical impulses per second. Settings can be adjusted based on the patient’s response via Bluetooth connection.

Dr. Marks described DBS as flexible, specific and less invasive than other surgical approaches. Primary candidates are the patients like Luke whose seizures originate in both halves of the brain. “This has the potential to be an absolute game-changer,” Dr. Marks said. “It’s essentially like delivering medication without all the medication side effects. That’s one way to think about this. We are directly targeting the area of interest without bathing the rest of the brain with unwanted chemicals.”

The mechanism of action of a DBS in epilepsy is not fully understood. Scientific studies have supported that certain thalamic nuclei of the brain, specifically the centromedian nuclei, are generators of the slow spike-and-wave complex and paroxysmal generalized fast activity seen in patients with Lennox-Gastaut syndrome. Studies have shown favorable seizure reduction over time possibly through modulation of network excitability through stimulation of the centromedian nucleus of the thalamus. 

Doctors will continue to monitor Luke and adjust his settings as needed. Dr. Keator hailed Luke’s patience, good humor and cooperative attitude. He considers the medical team at Cook Children’s his best friends and ploy for pranks. “He’s just a trooper, and he lets us try new things with him, which we appreciate,” Dr. Keator said. “He’s just ready to get his life going, and he’s motivated. And that makes our job a lot easier.”

Luke said having epilepsy “can be a little tough at times.” He’s glad for all the care he received at Cook Children’s and the chance to potentially pave the way for DBS in other children who have seizures. “And I hope I get better so I can go on beach vacations and go places to ride lots of trains,” he said.

His parents look forward to the possibility of Luke’s epilepsy improving to the point that he can go to school, sleep over at a friend’s house, or travel without having a seizure. They are cautiously optimistic that deep brain stimulation will provide long-term relief for Luke and other children with epilepsy. And they hold out hope that this latest twist in Luke’s journey can blaze a trail for wider options in epilepsy care.

“I prayed a lot about it. I believe a lot of things happen for a reason. I think Luke is here to show us a story, to teach us something, to show us how brave he is,” Ami said. “His attitude the whole time has been basically ‘I just want to do this to help other kids.’”

Eric Hubli, M.D., FACS, FAAP, is officially the first person to hold the title ‘Surgeon-in-Chief’ at Cook Children’s Health Care System. In his new role, Dr. Hubli will act as the presiding administrative leader over all surgery and procedure-related matters. Dr. Hubli leads the Pediatric Plastic Surgery program, specializing in craniofacial and cleft surgery, at the health care system. Since joining Cook Children’s in 2008, he has also served in administrative roles facilitating innovation and process improvement initiatives. In addition, Dr. Hubli spearheaded efforts to verify Cook Children’s as the first Level I Children’s Surgery Center in North Texas. The certification is sponsored by the American College of Surgeons.

“Dr. Hubli is a service-driven leader who has a demonstrated commitment to our mission, as well as in-depth knowledge and experience in the operating room,” said Rick W. Merrill, president and CEO of Cook Children’s. “Having a Surgeon-in-Chief will allow Cook Children’s to further open the line of communication and identify opportunities for surgical advancement, ultimately leading to an even better experience for our patients and their families.”

Dr. Hubli has more than 30 years of experience as a surgeon. He received his medical degree from Tufts University School of Medicine and later obtained a master’s degree in Health Care Management from Harvard University. He is also a father who knows what it’s like to have a child in the hospital.

“I know firsthand, from when my own son spent time here, that Cook Children’s provides stellar treatment and service from all levels and in all corners of the hospital,” Dr. Hubli said. “My son, like every patient that comes to us, expected the most up-to-date interventions. What he received went a step beyond, in that he was truly cared for. I’m hopeful more people will learn about the incredible legacy of excellence we have here.”

Dr. Hubli has also served in roles at The Lahey Clinic, Brigham and Women's Hospital, Boston Children's Hospital, Boston University and Boston City Hospitals.

“We’ve had two toddlers come into the ED with the beads lodged in their intestines,” Dr. Cribbs said. “Usually the beads pass with no problems, but these two patients required major surgery to remove the beads from their intestines.”

The beads are popular in floral arrangements and spas, but with their squishy texture, they are also sold as a sensory toy for children.

“They start as small and squishy, but when you put them in water, they expand up to 100 times their size,” Dr. Cribbs explained.

As a veteran physician who’s been at Cook Children’s since 1988, Dr. Cribbs said when she saw a picture of the colorful beads, she could see why children would try to eat them.

“They’re very colorful and attractive, and the texture is something you might want to put in your mouth,” Dr. Cribbs explained. “It reminds me a lot of Boba.”

However, her message to parents is to monitor children while they play with the beads or don’t allow children around them at all.

"When they're first swallowed, they aren't dangerous," Dr. Cribbs said. "But as they sit in the intestine, they grow and can cause a blockage."

The beads aren’t toxic, so if swallowed, they aren’t poisonous. However, not all children are lucky enough for the beads to pass through their system.

Dr. Cribbs says to remember, the smaller the child, the larger the bead, the more likely the bead is to get stuck in the child.

“With all small toys, there's a choking risk and parents need to be vigilant,” she said. “Unfortunately, probably half of all ingestions of foreign objects are not witnessed by anyone, and you don't know that it's happened until your child is choking, gagging, vomiting, or having other symptoms.”

In 2018, Cook Children’s Health Care System formed a partnership with Covenant Children’s Hospital in Lubbock, Texas, to bring cardiothoracic surgical care to families living in West Texas and eastern New Mexico. The partnership is part of an initiative to make treatment more convenient for patients and families in Lubbock and the surrounding areas. Since its launch, eight children have undergone surgery at Covenant Children’s.

Gunner’s parents, Donavin and Cassie Sanchez, said staying close to home for surgery at Covenant Children’s earlier this month where they had the support of family and friends in the area was a gift to all five of their children. Gunner is a quadruplet, along with siblings Arrow, Cheyenne and Scarlett. Hazen is their 8-year-old big brother.

“Our other kids are being spoiled right now by the whole family,” Cassie said when talking about how Gunner’s siblings fared while mom and dad stayed at their son’s bedside.

Gunner, who turned four on May 3 just days after his surgery, showed no outward signs or symptoms of a heart condition. His parents describe him as a typical rambunctious and outgoing boy who loves dirt, cars and any sport with a ball.

Even so, surgery could not wait.

“If we waited until we could tell something is wrong, we’ve waited way too long,” said Vincent Tam, M.D., director of cardiac surgery at Cook Children’s Medical Center. Dr. Tam is a part of the Cook Children’s cardiothoracic team that travels quarterly to Covenant Children’s to perform surgery.

“If we were to see symptoms in a kid this age, we’re really in trouble because,” he said. “By then, the valve is really messed up, his lungs would be damaged and his heart would have been overworked.”

The hole in the lower pumping chamber, called a ventricular septal defect (VSD), makes Gunner’s heart work much less efficiently, and extra blood flow to his lungs could eventually result in damage. The defect also led to a narrowing of his aortic valve opening due to a buildup of scar tissue under the valve. As it gradually builds up over time, the scar tissue limits blood flow and can lead to a leaky aortic valve.

“If we don’t intervene, the subaortic membrane narrowing will persist, and it will actually progress over time so that months and years from now the narrowing will be even worse,” Dr. Tam explained. “It will also begin to negatively affect the function of the aortic valve. So, we don’t want things to get to the point where the aortic valve itself is in jeopardy. The extra blood flow from his VSD opening in the lower pumping chamber means more work for his heart.”

It takes a diverse team of clinical professionals from both Cook Children’s and Covenant Children’s for kids like Gunner living in more rural areas of the country to have access to this type of specialized surgical care.

“Heart surgery is teamwork, Dr. Tam said. “It’s not just me. We need a whole team of people from cardiac anesthesia to operating room staff to someone to run the heart/lung machine to ICU doctors.”

Gunner’s surgery was a success, and his parents are hopeful for his future.

“I hope he can be just like his big brother,” Gunner’s mom said. “I hope he can run and play baseball and be the healthy little boy he deserves.”

The sweetest gift of all in this unique collaboration is that Gunner was discharged from the hospital on his birthday, just in time to celebrate with his brothers and sisters.

Learn more about Cook Children's partnership with Covenant Children's here.

But for some patients with severe seizures who have not responded to medications or who have had significant side effects with medications, epilepsy surgery might be the best option. The goal of epilepsy surgery is to identify and resect the area of the brain that is responsible for the generation of seizures. However, identifying this brain area can be challenging.

Thanks to new techniques developed by Christos Papadelis, Ph.D., director of Research at the Jane and John Justin Neurosciences Center at Cook Children’s, the ability to better locate the source of epilepsy has improved. Working with researchers at Boston Children’s Hospital, Massachusetts General Hospital, and Harvard Medical School, Dr. Papadelis developed a novel biomarker, or medical sign, that can identify the area in the brain causing seizures with non-invasive strategies and high precision. Using premiere imaging technology such as magnetoencephalography (or MEG) and high-density electroencephalography (or EEG), the team measured the magnetic and electric activity generated by the human brain to locate the biomarker and source of seizures. This work was recently published in the Annals of Neurology, a widely-respected journal produced by the American Neurology Association.

Improvement in precision of locating the source of seizures decreases the risk that a child will suffer from disability due to surgery. It also increases the odds that children will recover function and improve their quality of life without negative consequences. While still not easy, this research will allow parents to feel even more confident about their decision to move forward with such a complex procedure as epilepsy surgery.

Cook Children’s is fortunate to have bed capacity, adequate staffing and ample PPE, and it is not necessary to cancel any surgeries or procedures at this time. In compliance with all previous Executive Orders, we have reserved a portion of our available hospital beds should they be needed for other critical care and non-critical COVID patients.

As COVID-19 cases continue to rise in our region, additional restrictions are anticipated from state and local governing bodies, including the possible cancellation of elective surgeries and procedures.

ATTENTION PARENTS AND CAREGIVERS: Please go to your child’s appointment, pre-op appointment, surgery or procedure as scheduled. We are ready for you, and have safely prepared for your arrival. This includes all Cook Children's locations, including outpatient surgery centers.

Please remember, information is ever-changing, and as we receive additional guidance from Texas Governor Greg Abbott’s office and the Texas Health and Human Services Commission, we will adjust, implement any other necessary changes, and continue to stay in close communication with you.

If you have any questions before then, please visit with your child’s physician.

As always, your child’s safety and well-being remain our highest priority, and we thank you for your understanding during this very challenging time.

Source: Executive Order GA-31 which states “This prohibition shall not apply to any surgery or procedure that, if preformed in accordance with the commonly accepted standard of clinical practice, would not deplete any hospital capacity needed to cope with the COVID-19 disaster.”

Surgery teams from the two hospitals joined together in Lubbock on Monday to perform two cardiothoracic procedures on pediatric patients. The partnership is part of an initiative to make treatment more convenient for patients and families in Lubbock and surrounding areas.

“Cook Children’s and Covenant Children’s developed a partnership, which allowed Cook Children’s to come to Covenant and perform procedures on a recurring basis,” said David Gray, D.O., chief medical officer of Covenant Children’s.

Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s, performed both surgeries at Covenant Children’s. He traveled to Lubbock this week, along with seven other members of the Cook Children’s team. With the help of the surgical team from Covenant Children’s, Dr. Tam repaired the hearts of two children, including that of four-year-old Adrian Rosalez. Adrian was born with a vascular ring, a malformation of the aortic arch in the main blood vessel leading from the heart that partly or completely encircle the trachea or esophagus. Thanks to the collaboration between Cook Children’s and Covenant Children’s, Adrian is now recovering at home in Lubbock.

“Heart surgery is not a simple thing, I can’t take my suitcase of instruments, come to West Texas and do surgery," Dr. Tam said at a press conference at Covenant Children’s on Tuesday. "Heart surgery requires a large team of people, it requires a significant collaborative effort.”

Without this partnership, Adrian and his family would have had to travel to Dallas/Fort Worth, or another major medical hub to receive his surgery.

Covenant Children’s and Cook Children’s formed the joint partnership between the two hospitals in 2018. The plan allows Cook Children’s surgery team to perform cardiothoracic procedures on pediatric patients at Covenant Children’s once every quarter.

This verification means Cook Children’s has the best possible system in place for surgery in children. From our Level IV Neonatal Intensive Care Unit, Level II Trauma Center, state of the art equipment and surgery rooms to advanced training in pediatric subspecialties, Cook Children’s has invested everything it takes to make its medical center in downtown Fort Worth, Texas the preeminent place for pediatric surgery.

“This recognition means families can be assured their children are in the best possible hands when they turn to Cook Children’s for surgical care,” said Eric Hubli, M.D., FACS, medical director of Children’s Surgery at Cook Children’s. “We are proud of the incredible surgical staff who work tirelessly to make Cook Children’s the best possible place to heal, and of our leadership team who continuously invests in us because they know every child’s life is sacred.”

To put this recognition in perspective, there are more than 200 children’s hospitals in the United States. Cook Children’s is one of an elite group of 22 that holds the distinction of being a Level I Children’s Surgery Center.

“Kids are not small adults,” said Dr. Hubli. “They have unique diseases and medical issues that can only be treated by specially-trained professionals.”

Cook Children’s has certified physicians and nurses in pediatric surgery and anesthesia available 24 hours a day, seven days a week. In addition, Cook Children’s Teddy Bear Transport team is dedicated to getting the most medically fragile children and neonates, often in need of surgery, to our award-winning medical center quickly and safely. All of this is part of the essential criteria that was observed and evaluated by the American College of Surgeons, leading to the verification as a Level I Children’s Surgery Center.

To read Cook Children's press release on the Level I Children’s Surgery Center verification, click here. 

For most of her 20 years, Shanley Stuteville has been a patient at Cook Children’s.

She came to the medical center at the age of 3 after she began having seizures. Even as an adult, she continues to be seen by the Neurosciences team. After receiving care for so long, Shanley knows better than most how overwhelming a hospital stay can be, especially for younger kids.

“I was in the hospital last summer for my second phase [of testing], and my nurses were mentioning they were really glad I was older because a lot of the younger kids get scared,” Shanley said. “After that, my mom suggested I should write a book to help them.”

After years of testing and needles, Shanley has a wealth of empathy for younger patients. She recalls her initial feelings of fear of the unknown, but they were quickly lost when she realized her hospital was unlike any other.

Shanley began to write in July 2018, while scheduled to undergo testing at Cook Children's Neurology Epilepsy Monitoring Unit (EMU), where she would be watched 24/7 for four days to see what the source of her seizures was. The book became a family interest when her aunt began to illustrate Shanley’s medical team and created an animated world where leads, IVs and MRI machines weren’t so scary after all.

“Soon an IV was applied to my hand. Their magical spray made it something I could stand,” Shanley wrote. “It took away the pain and for that I was glad. It did not hurt, not even a tad.”

Shanley donated 50 copies of her children’s book to the Epilepsy Unit, but despite her appointments and hospital stays she’s found other ways to give back to her medical team. As a student leader at her university, Shanley completes a lot of service hours, but her service project last year was a hospital-sized treat.

As a “thank you” to her medical team, Shanley baked over 900 cookies for the Dodson Specialty Clinic staff. It took her a period of several school semesters to complete, but she delivered homemade cookies to each floor.

Although she spends an ample amount of time at Cook Children’s trying to figure out why she has seizures, it’s not uncommon for patients with epilepsy to have periods of time without seizures. Shanley would occasionally go 100 days without seizures, and even celebrated with a cake with her nearly lifelong doctor, Howard Kelfer, M.D., a Cook Children’s neurologist. However a life without seizures was never permanent.

“She’d go long periods of time without having a seizure and then one would come back around so it was really discouraging for them because they thought she was going to be over it,” Dr. Kelfer said. “It eventually became very clear that her seizures weren’t responding just to medications. It was always, ‘well she went this long without a seizure, maybe she’ll go longer this next time.”

Shanley was eventually determined as a surgical candidate after her time in the EMU last summer. Her surgery in May 2019 removed a portion of the front lobe in her brain. While she has not had a seizure since, it will take a year of no seizure activity before it can be deemed a success.

Shanley is now able to sleep through the night, a small comfort she didn’t have before her surgery. Her surgeons were also careful in the placement of her scar, which will be hidden by her hair when it begins to grow back.

“I have to say that I wouldn’t mind if it did [show],” Shanley said. “It will always be a reminder of the wonderful men and women at Cook, as well as hopefully provide an example to other children that they can walk through this and recover too.”

Shanley remains an advocate for younger patients, and is recovering quickly after her brain surgery. Her passion for patients inside the medical center has shaped her life for the last 17 years, and she is hopeful to make it a lifelong expression of gratitude.

“Shanley and her family come to all the family support groups and they’re willing to volunteer to talk to other families,” Dr. Kelfer said. “Shanley is extremely motivated to not allow her seizures define who she is.”

Following her surgery last month, Shanley will return to school this fall where she is studying to become a pediatric occupational therapist.

But other than that it would be hard to notice a difference in him and any other 5-year-old boy after becoming the first child at Cook Children's to undergo a trailblazing endoscopic epilepsy surgery.

Owen’s story begins at 8 months of age when his parents notice weakness on his right side. His parents know something isn't right with their son and they make an appointment for Monday with their pediatrician. But over the weekend they become afraid when they see Owen has stopped using the right side of his body.

His parents rush Owen to the nearest emergency room in Cleburne, Texas. From there, he's airlifted to Cook Children’s by CareFlight.

His initial scans show a large stroke in the left side of his brain which is soon discovered to be related to a new diagnosis of acute myeloid leukemia. He endures four phases of chemotherapy and fortunately enters remission where he remains today. While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it's his seizures that prove to be the most debilitating obstacle to overcome.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

Owen’s first seizures occur in the days following the stroke, but they are controlled with medication. He’s even able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3. His parents describe his seizures as periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events are described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite trials of at least six different medications – nothing helps his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., refers Owen to the Cook Children's Justin Comprehensive Epilepsy Program for epilepsy surgery evaluation. Once Cynthia Keator, M.D., took over his case, she begins a workup to determine where in the brain his seizures were arising, understanding the likelihood of seizure control with medications is minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captures many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan shows multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

Given that his seizures arise from such a large area of Owen's brain, the epilepsy team feels his best chance of seizure freedom is to disconnect the left side of his brain from the right by cutting the fibers (corpus callosum) that connects the two sides of the brain.

One traditional approach to this type of surgery is corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While considered by many to be the “gold standard” with good seizure control rates, after-surgery care involves a lengthy recovery in the hospital and then at home. While Owen’s family wants better seizure control, they’re reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., is one of only a few pediatric neurosurgeons in the United States who has experience doing similar procedures, using less invasive endoscopic techniques. Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well. We were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

Given the successful outcome with Owen, Cook Children’s has since performed two additional procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. Just the progress in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

After all, Balderamos watched the doctors at Cook Children’s try every other treatment option available for her son, Aaden, before deciding that surgery was the correct choice.

Aaden was diagnosed with tuberous sclerosis complex (TSC) at 4 days old. TSC is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations where these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.

At 4 months old, Stephanie captured on video Aaden’s first focal seizure. She sent the video to Aaden’s neurologist Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s. The next day Aaden started on a medication to treat those seizures. After a week, that seizure type stopped, but more would soon arise.

Four months later, infantile spasms started and they have continued in some form to this day – intractable to every therapy Dr. Perry has prescribed.

Aaden has tried several medications for his seizures and at times he reacted poorly to the medication. Dr. Perry talked to Stephanie about surgery early on, but she asked for other options.

Dr. Perry placed Aaden in a research trial of cannabidiol (CBD) oil for seizures in TSC. While he had seen success for other patients, the trial was not a success for Aaden and he needed other treatment options.

Like many with TSC, Aaden’s epilepsy has been intractable to therapy. The tumors in Aaden’s brain cause between eight to 10 seizures on average per day. Treatments thus far haven’t achieved the results that both Dr. Perry and Aaden’s mom had hoped.

“Intractable epilepsy, or the failure to achieve seizure freedom after trials of two appropriate chosen and dosed antiepileptic drugs, has profound impact on quality of life, psychosocial function, cognitive function, and mortality risk,” Dr. Perry said.

For these patients, surgical therapy, consisting of localization and subsequent resection/ablation of the epileptogenic zone can result in favorable seizure reduction and for many, seizure freedom. Among patients with intractable epilepsy, an estimated 5-50 percent may be candidates for epilepsy surgery.

"The decision to perform epilepsy surgery as treatment is a difficult process,” Dr. Perry said. “First we have to make sure we know exactly where in the brain the seizures are coming from, then we need to know the function of the part of the brain we plan to operate on. The goal is to make the seizures stop while avoiding an injury that would hurt the child’s speech, cause weakness, or cause loss of sensation.”

Aaden’s treatment has been a series of a couple of steps forward and then three more back. Now surgery remains the next option. David Donahue, M.D., a neurosurgeon at Cook Children’s, will operate on Aaden at some point in the near future in hopes to control Aaden’s seizures better, but a lot of work has to be done before he is ready for the operating room.

“I wanted to try other options before, surgery,” Stephanie said. “I was scared to think of surgery. I wanted to see if anything else could work. Sometimes I regret not doing the surgery earlier. But then I think, well at least I tried everything else before making that decision.”

Stephanie says she won’t allow herself to think about the surgery yet, but that’s just so she can continue with her daily life. She is the mother of Aaden and his older brother Eli, who is 8.

“When I think about the details of the surgery, it makes me sick to my stomach. I haven’t thought about it much,” Stephanie said. “When it pops into my mind, I push it to the side. That’s the way I handle it. I get really nervous. I will think about it about two days prior to the surgery when I have to get everything together.”

For more on this topic:

• The Art of Treating Epilepsy: Diagnosis and Treatment
• The Art of Treating Epilepsy: The Team Behind Aaden's Care
• Comprehensive Epilepsy Program
• Meet our Neurosciences Team
• Choosing Our Neurosciences Center

Here are some of their stories:

WHERE DOCTORS LISTEN

Linda Downey was just 12 years old when an eye doctor told her he could see fluid built up behind her eyes. It was 1968 and she knew something was wrong because she had been losing her eyesight and ability to walk over the previous two years.

“Other doctors thought it was psychological, but he said this is serious. She needs to see a neurosurgeon,” Downey said.

She was sent to see a physician at Fort Worth Children’s Hospital, located in the spot where the main building of Cook Children’s sits now. During her stay, she would take rides through the tunnel that connected the adjacent hospital (Texas Health Harris Methodist) to the children’s hospital.

“It was like a roller coaster, but it wasn’t much fun for me because of the fluid on my brain.”

Downey underwent three brain surgeries and finally left Fort Worth Children’s in 1969. Since then, she’s been to Cook Children’s many times to visit her friends’ kids who’ve become patients over the years. She says the difference between then and now is incredible.

“It’s very different than it used to be. There’s much more for children to do,” she said.

One thing that hasn’t changed – doctors listening to their patients.

“At the time, I just needed someone to listen,” Downey explained. “I wouldn’t be alive today if there wasn’t a hospital dedicated to listening to children and their parents.”

A NEW HOME

Mandy Flaming’s family also lives close to Cook Children’s, but not because they planned it that way.

Her daughter, Tatum, had been receiving treatment for leukemia for two years while living in Abilene. During Tatum’s final spinal procedure, doctors discovered she had relapsed. It was then that Tatum’s parents knew they couldn’t go home.

“We knew so much of her treatment would be in patient and our family would be separated if we were to travel back and forth,” said Flaming. “We decided, pretty much overnight, to move to Fort Worth.”

They called on their family and friends who had been offering their help for years and asked for assistance moving. Before they knew it, their home was packed up and on a moving truck headed to North Texas.

“We lived in the Ronald McDonald House for a couple of months while we were trying to get on our feet,” she said. “It was difficult at times because it wasn’t what we wanted, but it was what we had been handed so we were going to face it with bravery and go forward.”

Tatum finished her relapse therapy in 2013 and now see her Cook Children’s oncologist once a year for a checkup.

“We’re so grateful for the doctors and nurses. Anything we can give back, we are more than willing, even if it’s a blue light on our porch.”

For most of the first 20 years of his life, Michael Jankowiak never played ball or even owned a toy. His debilitating cerebral palsy wadded his fingers into a tight fist. He barely moved his hands, except to drive his electric wheel chair.

Then, during a visit to his neurologist, every changed. During a BOTOX® session at Cook Children’s, Fernando Acosta Jr., M.D., a neurologist at the Jane and John Justin Neurosciences Center, told Michael's mother, Lynn, that a surgeon on staff could possibly make a big difference in her son’s life.

Lynn was told Pamela Sherman, M.D., performed surgeries on children with disabilities. 

The original intent of the surgery was to help children clean the palms of their hand and aimed at improving hygiene for patient with significant contractures (the permanent tightening of muscles, tendons ligament or skin that results in a loss of motion in the affected joints).

But the sides effects were, as Lynn puts it, “pretty remarkable.”

Patients who need this surgery often demonstrate limited function with the contracted limb preoperatively. Things such as the ability to trim finger nails, avoid skin breakdown in the palm or elbow and the ease of nursing care with dressing, bathing and transferring to the wheel chair are the focus of surgical intervention. 

"Placing the upper extremity in a more functional position and releasing contractures often has a wonderful added benefit of improving use,” Dr. Sherman said. “Suddenly, the patient with previously limited spontaneous use of their limb has a hand that they are able to use to push a wheelchair control, use a communication board or hold an object.  A little goes a very long way for them.”

For the first time since he was a baby, Michael, who is now 24, opened up his left hand and played with a toy. Michael even held his own glass and brought it to his mouth to take a drink.

“This surgery has given him something new with his life,” Lynn said. “He has never been able to find a toy that he could play with. We took a golf-sized rubber ball. It’s elastic and put a rubber band on it. It looks like it came out of a gum ball machine. But when he’s playing with it, he grins from ear to ear. He can now even hold the ball and drops it for the dogs to play with him.”

After receiving a second surgery on his right hand that summer, Michael could now play on his iPad. He can swipe and select different videos to watch on YouTube.

What may have seemed so routine to most families has been nothing short of a miracle to Lynn because of how far her son has come.

Lynn described her first few months after she learned Michael had cerebral palsy as “fuzzy.” She lived in a terrified blur of emotions and cried for the first year after learning of his diagnosis.

But through her tears Lynn kept her resolve, beginning with one decision – Michael would be transferred from the family home in Abilene to Fort Worth to be treated by Cook Children’s. They then moved to Fort Worth to stay closer to Cook Children’s.

“To see your baby crawling, trying to learn to walk and then all of a sudden he’s not moving, was horrible,” Lynn said. “We insisted he be transferred. If he had not gotten transferred Michael would not be alive. I believe that with all my heart. I would not go anywhere else.”

The first month he stayed in the Pediatric ICU. Since then Michael has been seen by a plethora of specialties at Cook Children’s including Infectious Disease, Neurosciences, the Heart Center, Radiology, Surgery and Rehabilitation Services for issues ranging from pneumonia to cerebral palsy.

Michael stopped moving his extremities at 18 months and was diagnosed at that time.

Mark Shelton, M.D., was the physician on-call the day Michael first arrived at Cook Children’s. Dr. Shelton, a member of the Cook Children’s Physician Network, continues to be Michael’s primary care physician.

“Dr. Shelton, even though he is a specialist, I want him involved in everything,” Lynn said. “I trust him completely. I honestly think Dr. Shelton saved Michael’s life. He’s wonderful and so is his entire staff. He has such wonderful nurses. But all of Cook Children’s has such great nurses.”

Medical Director of Orthopedic Services David Gray, M.D., has also been there for Michael through multiple operative procedures associated with cerebral palsy.

“Dr. Gray is amazing. I remember him when he joined the Cook Children’s staff,” Lynn said. “A few years ago Michael broke his femur. When the ambulance came I told them I wasn’t going anywhere but Cook Children’s. Dr. Gray wasn’t on call that day, but somehow they got in touch with him and Dr. Gray managed to be there when we needed him.”

And now even today, after all this time, Lynn believes Cook Children’s works miracles for her son.

“It’s really the entire system,” Lynn said. “Everybody works so well together. It’s one of those places. I remember how I felt from the first time I walked in at 2 in the morning. It’s just comforting. You knew you were going to be treated well and your child was going to be taken care of by everyone.”

“Oh Lord. He’s my wild child,” Candice Morgan, Chance’s mother, says between a laugh and a sigh at her little boy.

Chance never stops. He acts like … well, like a typical 1 year old. No one would ever know this same little “wild child” experienced major surgery last week.

Chance underwent robotic surgery where the Cook Children’s Urology team sewed one ureter to another, using the new da Vinci® XI™ Surgical System.

Candice marvels at the three tiny incisions, less than an inch long, on her son’s lower abdomen. “I was worried at first,” Candice said. “My oldest son had surgery on his belly and he has one scar that’s still probably three inches long and that was 13 years ago.”

The da Vinci Xi provides minimally invasive surgery, but the robotic technology also allows the surgeons performing the procedure the latest in technology to operate the precision control system.

Jonathan Kaye, M.D., one of the members of Cook Children’s world-renowned urology team, performed the surgery on Chance. He and Blake Palmer, M.D., also a renowned and accomplished robotic surgeon and fellow member of the Cook Children’s Robotic team, have already successfully completed several such cases at Cook Children’s since the Robotic program began here in August.

The surgery itself looks like a cross between the latest in futuristic robot technology and the coolest video game you could ever play.

The surgeon sits in a chair and looks into a screen that reminds you of what you’ve seen people wear to watch virtual reality. He performs the surgery by placing his fingers in what looks like a gloved device. The surgeon uses his fingers to control the robot’s arms and the screen to perform the surgery.

“This is truly the latest and most advanced technology in our field. This technology will allow us to provide minimally invasive surgery on any number of procedures, ranging from the most routine to the most complex cases,” Dr. Kaye said. “It is the type of technology we are always looking for as surgeons because it allows us to provide the most precise and meticulous operation possible.”

Along with the precision of the surgery itself, the minimally invasive procedure reduces much of the pain and many complications associated with open procedures surgeons usually perform.

“This surgery helps with the goal we all have as a team and at Cook Children’s – to return these kids back to being kids as quickly as possible,” Dr. Palmer said. “The surgeries we perform with the da Vinci are still complex. No surgery is routine when it is your child. But because the surgery is minimally invasive, we are able to return the children home more quickly than most parents ever thought possible. Many are home the same day or the next day.”

Chance stayed overnight, but by the next day there was little doubt he was ready to go home.

“It’s really great and pretty amazing,” Candice said. “With him being 1 and very active, it’s great to not have a big incision. When friends and family heard he had just had surgery, they couldn’t believe it. He was just all over the place like nothing happened.”

Meet the Urology Team at Cook Children's:

As part of our new Pediatric Urology department, the Genitourinary Research, Education and Treatment (GREAT) Kids program is led by a team of world-renowned medical professionals with expertise in both common and rare genitourinary diseases and conditions to the children of North Texas and beyond. Learn more about this program by clicking here.

If you would like to schedule an appointment, refer a patient or speak to the staff, please call the offices at 682-303-0376 or click here to learn more about appointments and referrals.

Miami Robertson was a 14-year-old high school athlete with debilitating asthma, or so she thought.

It wasn’t until her friend noticed Miami’s breathing problems and a sunken chest that she was diagnosed with pectus excavatum.

“I sucked on an inhaler for three years before I became best friends with Cassie, my literal lifesaver,” Miami said. “When the inhaler never actually did the job it should have, Cassie became concerned and started looking for symptoms herself. Her older brother, Curry, had previously been diagnosed with pectus excavatum and was treated at Cook Children’s.”

Miami began to doubt the asthma diagnosis when her symptoms worsened with no relief from her inhaler. She took her friend’s advice and began to research pectus excavatum and quickly realized many of her symptoms matched the diagnosis.

“Of course the coaches and parents self-diagnosed me with asthma, but who would have known any better,” Miami remembers. “I had trouble breathing, even just jogging a simple lap around a track.”

Pectus excavatum (PE) is a condition where the breastbone in the chest is sunken inward, causing breathing difficulties and in rare cases mild cardiac issues.

PE can often be hereditary; Miami’s family soon realized her mother may also have the condition and was unaware until Miami was diagnosed.

“Although no one has previously been diagnosed with PE in my family, it may have been due to lack of knowledge,” Miami said. “My mom has always had a depression in her chest, but has never experienced any shortness of breath or any other symptoms that I experienced.”

Miami’s case was different from most with PE. It usually presents in younger children, particularly boys, but in some cases it may start to emerge during puberty.

“It originally began in the seventh grade while I was playing basketball at the YMCA,” Miami said. “I remember feeling as if I was trapped under a huge rock, like something was holding me down.”

Pectus excavatum can make breathing a chore, but Miami didn’t allow her breathing difficulties to stop her from her love for competition.

“The week before volleyball season of my sophomore year, I ran 13 timed miles before I finally conquered those long four laps with a time of 8:57,” Miami recalled. “But this was just normal for me. I grabbed my inhaler, wiped the tears off of my face, and staggered up the hill to the field house.”

Miami was referred to Cook Children’s, where she met José Iglesias, M.D., a Cook Children's surgeon who specializes in pectus excavatum, and eventually found treatment. Her surgery, called the Nuss Procedure, placed a curved steel bar underneath her ribs and sternum, which allowed for the sternum to rise and eliminated the sunken chest.

Miami’s recovery involved a week-long stay at Cook Children’s and limited activity at home for two months post-op, where she did breathing exercises in hopes the procedure would ease her breathing difficulties.

“If the cause of their difficulty breathing appears to be from the chest wall compression, then they have an excellent chance of relief. With correction, they feel significant improvement after initial recovery of the procedure and often additional improvement after removal of the bracing bar,” Dr. Iglesias said.

While in recovery at Cook Children’s, Miami made friends with staff and volunteers, who celebrated for her accomplishments and even washed her hair.

“When I was first able to walk on my own again, the nurses at the stations on each end of the circle hall would cheer me on as I slowly but surely put one foot in front of the other,” Miami said. “I still have the stuffed bear that I picked out off of the huge cart of animals that rolled into my room one day.”

Her procedure didn’t guarantee she would be able to breathe any better, but Miami held onto hope that her breaths would become effortless.

“Although it was said that the Nuss Procedure wasn’t sure to increase my lung capacity, I had faith that it would,” Miami said. “Little did I know that the next time I stepped foot on a volleyball court I would have a bar in my chest, turning my A game into my A+ game.”

A few months after her surgery, Miami began to see a new way of life with a new way to breathe. As she eased into more activity, she soon after dove back in to her athletic lifestyle, beginning with the mile that once gave her so much trouble.

“I was allowed to do some light activities geared more toward my legs,” Miami said. “Before long, I started bumping the volleyball to myself, rotating through some drills, and running the mile with my teammates. My first mile with the bar clocked in at 8:39, and not a tear was shed.”

Now 19 years old, Miami finally feels the relief of a deep breath. Although it was a difficult road to a diagnosis and recovery, Miami is still thankful for her struggles. Her perseverance allows her to stay in the game.

“My life was and is the best adventure I have ever been on. Even when I was battling PE, I was living life to the fullest,” Miami said. “I never let it keep me from participating in the sports that I loved, but it sure was a relief when I didn’t have to fight it any longer.”

She had her first heart surgery at Cook Children’s when she was 11 months old. Her second came at age 15 and left her with vivid memories of the place where she would one day work.

“It was magical. I still remember the atrium, the paint on the ceiling and all of the colors. I also remember the staff. The nurses and doctors were excellent and so friendly.”

Heart surgery isn’t something one would expect to have fond memories of, but Flores says her experience as a Cook Children’s patient helped guide her life in a direction she may never have imagined.

“Growing up, I always wanted to be like my pediatric cardiologist, Dr. Lai. Now, here I am, working alongside him.”

Not only is she working with the physician who cared for her as a child, but also with her current cardiologist, Scott Pilgrim, MD, Medical Director of the Adult Congenital Heart Defect Program at Cook Children’s. Flores may be the only Cook Children’s employee able to say she’s a lifelong patient, still being treated today, but it’s a title she carries well. She knows what the patients are going through, and uses her experience to reassure them and their families.

“Sometimes I tear up because I’m thinking wow, ‘Is this what my mom was like or is this what I was like?’” said Flores. “I know surgery is scary. I’ve been through it, so I’m there, scared with them and praying with them. It can be hard but also very rewarding. “

When it comes to the future, Flores doesn’t seem too concerned about change. She says she wants to continue what she’s already doing, helping patients understand what to expect and helping parents understand what their child is going through. Most of all, she wants everyone to know that having a heart defect doesn’t need to hold a person back.

“I want patients to know that you can do anything you want to do. You can be a nurse, you can be a nurse practitioner, you can be a teacher or you can be the president!”

As for Flores, she’s perfectly happy being a nurse practitioner at Cook Children’s.

“I just want to continue working here forever. I fell in love with this place when I was a kid and am still in love with it now. “

The CDC says more public health research is urgently needed to find out why the dramatic increase in what the CDC describes as a "serious birth defect of the abdominal wall."

Patrick Thomas, M.D., FACS, a pediatric surgeon at Cook Children’s says gastroschisis results from a defect in the abdominal wall with herniation of the abdominal contents (such as intestines, stomach and often the gonads). The hernia is always to the right of the bellybutton.

Treatment includes starting immediate IV fluids and placing the infant in an organ bag below the chest to prevent heat loss and to protect the bowel. Surgical options can include immediate repair by placing the organs back in the abdomen and closing the abdominal wall defect. For cases not responsive to immediate closure, a protective bandage (called a silo) is placed and the bowel gradually reduced until closure of the defect can be performed about a week later.

Dr. Thomas said ongoing studies are needed to identify the causes of gastroschisis, but the current treatment through surgery has produced “great outcomes.”

Candace Gamble, M.D., a medical geneticist at Cook Children’s, calls the report from the CDC on the increasing prevalence of gastroschisis, significant.

“It is particularly important for health care providers in the prenatal and neonatal setting as we care for these babies,” Dr. Gamble said. “While expecting parents have cause for concern, the occurrence is still relatively rare considering there are well over 3 million babies born in the U.S. each year. However, it’s a reminder that every pregnancy has a 3-5 percent risk of some type of congenital birth defect. Thus good prenatal care is essential in detecting these defects early so that these babies can receive the proper management.”

Both Dr. Thomas and Dr. Gamble state that researchers and clinicians do not fully understand why this is happening. There is no known genetic mutation that causes gastroschisis. It is likely due to a number of genetic and environmental factors, which lead to an error in fetal development. Doctors do know that there are certain factors that increase the risk for having a baby with gastroschisis, including being a pregnant mother under the age of 20, smoking, and taking vasoconstrictive medications.

“Prenatal care is very important,” Dr. Gamble said. “A screening test where we measure the maternal serum alpha fetoprotein around 16 weeks gestation can be used to detect some babies with gastroschisis, other abdominal wall defects, and more specific defects. In addition, the anatomy ultrasound at 20 weeks gestation can also be useful to detect this and other congenital abnormalities. However, neither measure can completely rule out all birth defects. It is important for parents to discuss these risk and screening options with their health care provider.”

*Illustration courtesy of CDC.

The more frightening thing is the amount of patients that we don’t read about who are undergoing the same surgery. More and more, young baseball players ages 15-19 years old are sustaining this same injury and having to undergo this surgical procedure.

Ulnar collateral ligament reconstruction used to be an injury that we saw in ball players later in their careers. John Smoltz played for the Atlanta Braves and was recently inducted into the Baseball Hall of Fame. His career benefitted from Tommy John surgery. Currently, he's the only player inducted into the Hall of Fame who received Tommy John surgery. But he warns against the number of young people receiving the surgery today, calling it an "epidemic."

"I want to encourage the families and parents that are out there that this is not normal to have a surgery at 14 and 15 years old," Smoltz said. "That you have time, that baseball is not a year-round sport. That you have an opportunity to be athletic and play other sports. Don’t let the institutions that are out there running before you guaranteeing scholarship dollars and signing bonuses that this is the way….

I want to encourage you, if nothing else, know that your children’s passion and desire to play baseball is something that they can do without a competitive pitch. Every throw a kid makes today is a competitive pitch. They don’t go outside, they don’t have fun, they don’t throw enough — but they’re competing and maxing out too hard, too early, and that’s why we’re having these problems. Please, take care of those great future arms.”

So are his concerns warranted? In short, yes.

A recent study showed that 15-19 year-olds accounted for 56.7 percent of the ulnar collateral ligament reconstructions performed in the U.S. between 2007-2011.

This is a scary statistic considering this means that over half the UCL reconstructions done in the U.S. are performed on patients who haven’t finished their freshman year of college. So why has this become so much more prevalent in younger athletes?

I think the simple answer is the volume of pitches being thrown. If we look at the trends with today’s young baseball players, more often than not they are playing year round, playing on multiple teams, and at times playing on multiple teams at the same time. At some point kids have to put down the baseball and give their arm a break.

Little leaguers who pitch have a major disadvantage compared to their major league counterparts: they are still growing. This means that each time they take the mound they are pitching with a new body. As kids grow taller, it means they have longer limbs that they have to control, and this takes more strength and more coordination, strength and coordination that often doesn’t keep pace with how fast the athlete is growing.

So how do we reverse the trend of these young baseball players dealing with this terrible injury? Here are four recommendations.

1.Decrease the volume of throws

2.Don’t pitch with fatigue

3.Don’t throw breaking pitches (until skeletally mature enough and skilled enough to do it correctly)

4.Delay specialization (play multiple sports)

Decrease the volume of throws

Decreasing pitch volume I feel is the most important of these three recommendations. It’s not just following pitch counts it’s avoiding playing multiple positions with a high volume of throws. I have had many patients come in and say “we follow all the recommended pitch counts,” but as I dig deeper I find out that, yes, they are following pitch counts, but the child is playing catcher when he isn’t pitching. The bottom line is that it isn’t just pitch count alone, it is the total volume of throws we need to think about.

Don’t pitch with fatigue

Making sure our players aren’t pitching fatigued is also a big part of keeping our young throwers safe. If a player is fatigued and continues to pitch, even if they haven’t reached their pitch count, they are putting themselves at risk. The National Athletic Trainers’ Association (NATA) Position Statement on Prevention of Pediatric Overuse Injuries cited a study showing that a greater percentage of pitchers with shoulder or elbow injuries started at another position and pitched with arm fatigue. So if a player has been out in the hot sun playing short stop in the first game of a double header it probably isn’t a wise decision for him to pitch in the second game

Don’t throw breaking pitches (until physically mature enough and skilled enough to do it correctly)

I think most parents of young baseball players have at least heard the recommendations to avoid curveballs and sliders until the player is older, but for some reason we still have young pitchers throwing these breaking pitches. Another study cited in the NATA Position Statement on Prevention of Pediatric Overuse Injuries showed the risk of elbow pain increased 86 percent in youth pitchers throwing sliders, and the risk of shoulder pain increased 56 percent for pitchers throwing curveballs. We as parents need to remember our kids are going to watch their favorite big league pitcher and want to throw all the same pitches it is up to us as parents to step in and say you aren’t ready for that.

Delaying Specialization

There is an interesting study finding that more of the successful, Hall of Fame–type pitchers come from up north, where Hall of Fame hitters come from all over — a lot of them from the South. The gist of the study was that because there are several months of the year in these northern states that it is too cold to be outside playing baseball these pitchers couldn’t participate in baseball year round. During the winter months they had to put the baseball down and do something else. Once again referring back to the NATA’s position statement they state, “Young athletes who participate in a variety of sports tend to have fewer injuries and play longer, thereby maintaining a higher level of physical activity than those who specialize before puberty.” Delaying specialization is also a big part of decreasing volume, because if kids are playing another sport they will get that nice break that they need from throwing.

This blog by no means touches on all the factors that lead to these injuries, and the four recommendations are by no means the complete list of ways to prevent these injuries, but following these recommendations is a good place to start to keep, our young ball players’ arms nice and healthy.

Resources

• Baseball Injury Prevention
• Top 10 questions parents have about sports injuries
• Young athlete's injury prevention guide
• Strength training in children/adolescents

Six days after her high school graduation, Harkey found out she was pregnant. During her pregnancy she faced several complications due to the fact that her son’s intestines were located outside his belly, a condition known as gastroschisis.

Once Aiden Wayne Harkey-Ellis entered the world, Harkey got to hold her son. But only briefly before he was rushed to Cook Children’s Medical Center where Chip Uffman, M.D., performed surgery on Aiden.

Healthy babies are born with about 200 centimeters of the small intestine. Aiden now has 20 centimeters and only one-third of his colon. He has severe short bowel syndrome (SBS) and will always have trouble gaining weight and absorbing nutrients.

He has had 26 surgeries since birth, including  two transverse enteroplasty procedures to lenghten his bowels and exploratory bowel surgery, a G-button where he receives feeding through a tube and several line placements.

“He is now home safe and sound, however we have been in and out of the very place that saved his life, Cook Children’s, and will be here for years to come,” Harkey said. “I was recently reminded, even if it seems like we’re not progressing, every breath is a miracle and progress.”

Short bowel syndrome occurs any time enough intestine is lost to cause poor absorption of nutrients. There are many causes of SBS. The most common cause in children is necrotizing enterocolitis, a rare complication of prematurity or other serious illness in the newborn period. Other causes include congenital intestinal anomalies (such as gastroschisis, malrotation or intestinal atresias), surgical resection for Crohn disease, trauma, malignancy, radiation, or vascular insufficiency, to name a few.

“SBS is a problem because affected individuals may not be able to absorb enough nutrition and water to grow and thrive,” said Danny Rafati, M.D., Ph.D., a gastroenterologist at Cook Children’s. “Also, because certain parts of the gastrointestinal tract perform unique roles, even losing relatively short segments can lead to a problem absorbing important nutrients.”

Individuals with SBS may need special formulas or even intravenous supplementation (often called TPN) to ensure they have enough nutrition and fluid to stay healthy and thrive. Due to these special needs some children require feeding tubes or long-term central venous lines.

And this is where Harkey becomes upset. She’s seen in the news lately where celebrities have been using the same IV nutrition that children with conditions like SBS need to survive for preventing hangovers or jet lag.

Beth Deen, a pharmacist at Cook Children’s, says that most of the components of the parenteral nutrition solutions have been on back order at some time in the past few years. One of most problematic has included intravenous calcium that premature neonates and cardiac infants cannot live without.

The reasons for shortages include a shutdown of a manufacturing plant due to contamination, which has stopped the production of important products.

When this happens, it creates shortages of needed medication.

Deen said the government and agencies such as the Food and Drug Administration have been involved in the past five years to help solve this problem, but it remains a day-to-day struggle.

“Judicious use of medications includes reserving it for those who truly need it,” Deen said. “We give these medications and vitamins we place in IVs to provide these kids with the nutrition that sustain them. To use them for any reason other than to help the patients in need  are a waste of the materials needed to save lives.”

Clark couldn’t resist. Just like all the times she’s spent playing with some of the long-term ventilated patient population, actually getting on the floor mats along with the children. She says this helps keep her grounded in Cook Children’s nursing philosophy of caring.

It’s that attitude that helps someone like Clark stand out and be named as one of the 2015 DFW Great 100 Nurses, sponsored by DFW Great 100 Nurses Inc.

Clark was one of four Cook Children’s nurses named to the DFW Great 100, along with Melissa Irving, Bernadette Kelly and Elizabeth Leper.

The nurses were chosen based on the following categories - role model, leadership qualities, service to the community, compassionate caregiver and significant contributions.

Here’s a glimpse of the nomination letters sent on behalf of the recipients:

Melissa Irving, Teddy Bear Transport, Neonatal Transport Nurse

Melissa has been a member of the Teddy Bear Transport team since1985. Melissa was one of the first team members; she set the standard for the qualities that we look for in our nurses today: compassion, leadership, critical thinking, and stewardship. Being a transport nurse is not exactly the same as being a bed side nurse. You play many different roles, as the team is comprised of a nurse, RT and a paramedic. You have to be able to assess and relay the information to the accepting physicians without hesitation. Melissa is an excellent teacher and often provides her expertise to the referring staff to help with the care they provide prior to our arrival …

Melissa leaves a lasting impression on her patients. She becomes that beacon of hope for those she cares for; it could be the gentle voice or the assuring touch and the ever-present smile. She has consistently received cards and emails from the families that she has cared for over the past 30 years; she just connects with people …

Melissa is such a compassionate caregiver; she has an amazing affinity to calm those around her. She cares for the entire team, the referring staff as well as her patients. She treats every child as if they were her very own; it is her calling to provide the best care.

Bernadette Kelly, Cardiac Intensive Care Unit Nurse Manager

Recently the CICU cared for a patient (baby) whose mother never left the bedside. The patient was constantly fussy and crying secondary to his diagnosis. This family had been on the unit for a few weeks and was noted to have no additional family support and difficulty communicating with staff as English was their second spoken language.

(Kelly) was a resource nurse that day and did not have a patient assignment. She noticed the mom looked exhausted and took this as a time to discuss self-care. It was around 4 p.m. when she asked the mother if she had eaten. She said, “No, I can’t leave because he will cry if I put him down.”

(Kelly) knew due to his defect he could not cry for long periods without having status changes. This nominee volunteered to take the baby and he immediately went to sleep with her rocking him. Once his mother noticed her compassion toward her ill infant she left to go eat. When she came back, (Kelly) encouraged her to lie down and that she would still be available to hold him. Caregiver fatigue is often seen in parents that care for ill children. (Kelly) provided education to a mother with minimal family support about the importance of her eating and resting while her son was in the ICU. This young mother was so grateful for the time this nominee spent holding her baby so she could take care of herself. (Kelly’s) compassion for pediatric cardiac patients has been at the forefront of her career and secondary to her skill set, compassion and empathy, she was the PICU Employee of the Year in 2012.

Elizabeth Leeper, Perioperative Services Nurse Manager

(Leeper) is a compassionate caregiver to patients, families and staff. This nurse follows our philosophy of being a patient advocate and promoting a culture of serving others with respect for individuality and diversity. I have seen her make allowances for special needs patients collaborating with anesthesia and nurses.

For example, we have older autistic children that have extreme separation anxiety making it difficult for a nurse to push them back on a hospital bed to surgery. This nurse will step up and make special provisions for a parent to go back to the OR with the patient until they are asleep. This consideration promotes the organizations promise of a save environment for our patients and families. This candidate is very caring to staff in times of family emergencies, personal problems and need for time away from work.

Her kindness and concern for her staff make you feel you are a family member of hers. I have seen her cry and comfort her colleagues during times of lost loved ones, sick or injured children or spouse or simply having a bad day. I was stuck in Houston when my loved one was having surgery and we had to stay longer due to complications. Not only did she empathize and console me but helped me cover my shifts so I could stay and look after my loved one and not worry about my job.

Teresa Clark, Chief Nursing Officer

This nurse has been a role model for those around her for three decades. At our institution alone, she has practiced and offered sound leadership for over 25 years. She has both an advanced certification and a master’s degree. From my own conversations with this nurse, I know that she has always felt called to our profession … this calling is not something you can teach ...

While this candidate has a long history in nursing and one that illustrates her wonderful work, this past year’s contributions are remarkable. She was promoted to CNO following the retirement of a long tenured CNO. She demonstrated her strength as she held together a large nursing staff – encouraging teamwork, professionalism and collaboration during this change in leadership. She led efforts to finalize and implement a new professional development program, restructured our nursing org chart and updated our nursing practice model and nursing strategic plan. She has accomplished all of this while enrolled in her DNP program and battling metastatic breast cancer.

Still, I think her most significant contribution is her caring … which is really the defining characteristic of our profession. She cares about the children in our community, the staff she leads, the organization she works for and the profession she was called to serve.

This Great 100 nominee displays such dedication to our profession of healing hands and caring hearts that inspires me even today.