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."

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.

“This is not a decision our administrative team takes lightly,” said Stan Davis, Chief Operating Officer at Cook Children’s Health Care System. “Elective surgeries are not synonymous with cosmetic or unnecessary procedures. These are children who require surgical intervention to improve their health and wellbeing. We are doing everything in our power to ensure every child who needs us is taken care of.”

In addition to rescheduling elective surgeries, we are having to divert patients away from Cook Children’s when beds are not available. This does not just affect children with COVID-19, but kids with all sorts of medical issues from traumatic accidents to new diagnoses. new onset diabetic ketoacidosis. Children’s hospitals across the state are experiencing a similar situation. To do our part, Cook Children’s is also taking patients from other regions whenever possible.

“It’s unfortunate that we are physically unable to care for all of the children who need us right now. If we have to divert a patient away from Cook Children’s, we ensure we find them an appropriate facility, though that may be several hours away from home or even in another state,” said Cheryl Petersen, Chief Nursing Officer at Cook Children’s.

Right now, we’re asking for patience and understanding as we work to handle the burden COVID-19 is weighing on our health care system. But we need your help. Please get the COVID-19 vaccine for yourself and all eligible children. It is safe and effective. In fact, half of the COVID-19 patients we have treated since the vaccine was approved for children 12 and up have been unvaccinated teenagers. To date, we have not treated a single vaccinated patient for severe COVID-19.

Here are some other steps you can take to help us slow the spread of this virus:

• Send your child to school in a mask. Ask them to keep it on at all times unless outside or eating.
• All children in school over age 2 should be masking indoors. School districts should strive for universal masking right now.
• Quarantine all children who come in contact with a COVID+ child if unmasked and for longer than 15 minutes indoors.
• Please keep your sick children home from school.
• Postpone indoor gatherings.
• If you have to gather, go outside.
• Limit the number of people who can attend sporting or theatrical events at schools so there can be spacing between families.
• Stay at least six feet away from others outside of your immediate family.

For 103 years, our community has supported Cook Children’s to ensure the children in our care have the very best medical treatment. We need your support now more than ever. There is no way out of this dark time without your help.