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.”

From the moment she was born, Taylor knew there was something different about Rubye. She immediately noticed her dark eyes consistently avoided direct light. While this isn’t completely uncommon for newborns, Taylor knew this was different from her older daughter.

“I was born with crossed eyes, so I’ve always paid really close attention to my daughters’ eyes to make sure they weren’t turning in,” Taylor said. “I started to notice that she wouldn’t open her eyes at all unless the light was directly covered. I remember when I was in the hospital with her, I noticed if I blocked the light behind my head that she would open her eyes a little bit. It was interesting because no one else caught onto this so I just kept looking at her eyes.”

Rubye went home with her family but quickly developed an eye infection, to which Taylor brought her to their family doctor. Taylor asked the nurse if she could tell what Rubye’s eye color was, and was told it was difficult to tell due to how dilated her eyes were, but the outer portion looked blue.

Taylor’s intuition knew something wasn’t right. Rubye’s eye had a slight tremor and she was extremely small for her age. Taylor began to diligently search for an answer that would make sense.

“I finally looked up no irises or lack of irises, and I found aniridia,” Taylor explained. “I was in the car with my husband and I just started crying. He asked me what was wrong and I just said, ‘I think I know what’s wrong with Rubye.’”

Aniridia is an eye disorder known for causing many eye conditions. For Rubye, she has no depth perception, no detail vision, nystagmus, small optic nerve, lack of the colored part of the eye and others. People with aniridia may have a slight color around the pupil, while others do not, and many experience sensitivity to light and blindness.

After finding this information, Taylor emailed Rubye’s pediatrician and asked them to research aniridia before her upcoming one-month appointment. Rubye was diagnosed with aniridia at this appointment.

Once they received her diagnosis of aniridia, Rubye was scheduled for an ultrasound of her abdomen to check for Wilms tumors, which are more likely to occur with this diagnosis. While her scans at this time were clear, Rubye was sent to Cook Children’s Genetics Center to test for WAGR syndrome, an extremely rare syndrome found in less than 500 people world-wide that encompasses Wilms tumors, aniridia, genitourinary anomalies, and ranges of developmental delays.

“Other kids with WAGR have intellectual delays, some kids don’t speak, some don’t see at all, and some have different physical and mental delays,” Taylor said. “From what we can tell, Rubye couldn’t see until she was about six months old.”

Rubye routinely sees multiple specialists at Cook Children’s to ensure she is making progress, but also receives cancer surveillance appointments due to how quickly Wilms tumors can occur.

“She has to get routine scans every few months, and there’s a build up to those appointments because bad news could be coming. But then we get the scans and everything looks good, and it’s a huge relief. However, then you only get a few months and the cycle starts over,”  Blake Palmer, M.D., medical director of Cook Children’s Urology, said. “Every time I walk in the room to read results, everyone is just holding their breath. And, when everything looks good, that night will always be great for everyone. But, then tomorrow is another day where there is another worry. It’s so hard.” 

Rubye’s routine three-month scans proved to be a necessary intervention when her results showed a mass on one of her kidneys on September 28, 2020. At this point, she began chemo and had a partial nephrectomy of her right kidney.

Since March 2021, Rubye has finished chemotherapy, and graduated from physical therapy, occupational therapy, and her speech therapies. She will begin seeing an endocrinologist due to how small she is, and will continue to have close monitoring for more Wilms tumors.

“It’s hard to know what this will mean for her and her future. Some of the missing genes can cause problems with severe developmental delay, how her body processes proteins and many other possibilities, but I know God is walking right beside me because he has made Rubye so unique and special and has given me the honor of being her mom,” Taylor said. “She is what keeps me positive day-to-day. She has defied so many odds that have been placed in front of her and that’s what keeps me going.”

Rubye’s psychologist, Cortney Wolfe-Christensen, Ph.D., is confident that Taylor’s advocacy will provide a way for Rubye to continue to beat the odds and overcome the struggles that often accompany WAGR syndrome. 

“Rubye's mom has been her biggest advocate throughout this journey. She has navigated Rubye's path through Cook Children's by communicating well with providers and has always been open to learning new information, even when there was a chance the news could be devastating,” Wolfe-Christensen said. “I am confident that with her mom by her side, Rubye will grow up to reach her fullest potential. As clinicians, we are all thankful that we have been able to be part of Rubye's story."

Taylor and her family continue to watch Rubye defy statistics and odds through all of the pivotal moments that she steadily overcomes.

“I once had a friend tell me she celebrates the ‘inchstones.' For our little zebras, which is what individuals with rare diagnoses are often called, they may just make inchstones, but we will celebrate each of those, because they’re a sign of forward growth,” Taylor said.

What is W.A.G.R. Syndrome?

WAGR syndrome is a rare genetic syndrome that is estimated to occur from one in 500,000 to one in 1,000,000 births.

• Wilm’s tumor - Wilms tumor is a type of kidney cancer that is primarily found in children.

• Aniridia - Absence of the iris, typically in both eyes. Aniridia can cause sensitivity to light and additional eye problems such as glaucoma and cataracts.

• Genitourinary Tract Abnormalities

• Range of Developmental Delays - People with WAGR may have intellectual disability, delays in Gross Motor development, delays in Fine Motor development and delayed speech.

“They told me I was a match,” Ferrel recalls, “and there was no hesitation. I wanted to be the one who helped her. It’s a blessing for me to be the donor who cures her disease.”

The Ferrel family are active ranchers from Panhandle, Texas, and accustomed to the small-town way of life. In January 2018, 14-year-old Jackie started to look a little puffy, Audrey said, and her behavior was off.

Audrey took Jackie to their local doctor for what they thought would be a routine diagnosis. Instead, they got a call from the physician’s office that would change their lives.

“We had barely arrived home when they called with the results — Jackie was in end-stage renal failure,” Audrey said. “They told me, ‘You need to get back here right now. We’re flying her to Cook Children’s.’”

Audrey and her husband, Ty, packed up the family and drove to Cook Children’s Medical Center in Fort Worth. Cook Children’s urologist and surgical director Blake Palmer, M.D., diagnosed Jackie with IgA Nephropathy, or Berger’s Disease, which has no cure. The disease occurs when an antibody called immunoglobulin A builds up in the kidneys. They become inflamed and lose their ability to filter waste from the blood, which can be fatal if not treated.

Jackie would need a transplant to survive.

Berger’s Disease usually progresses slowly over years, but the course of the illness varies from person to person. Its exact cause is unknown.

Medication can treat some cases, but transplants are often needed. Initially, Jackie was hospitalized at Cook Children’s for a month, but she was eventually able to go home on dialysis. She resumed activity and even began track season.

“She had an awesome track season. She did very well,” Audrey said. “In addition to that, she still participated in cross country, qualified for regionals, and played basketball and tennis.”

Despite her outward progress, Jackie’s internal condition worsened, and a transplant was needed to save her life.

In December 2018 Jackie was placed on the transplant list, and they received a call for a high risk kidney shortly after, however they declined, knowing Audrey would begin testing for a live donor transplant.

“She told us she was feeling great, she didn’t want to take a high risk kidney if she could hold out,” Audrey said. “I was convicted from the beginning that my kidney was going to be the one.”

The process for matching with and receiving a live kidney donation is extensive and requires multiple EKGs, various scans and blood tests to ensure the kidney is a match and the risk is low. Surgeons at Texas Health Harris Methodist Hospital Fort Worth, which has collaborated with Cook Children’s for years on various projects, evaluated Audrey to determine whether she would be a candidate.

“Over time dialysis becomes less and less effective,” Dr. Palmer said. “She [Jackie] was more ill on a day-to-day basis, really just not able to thrive or have a normal life like we’d expect a normal 15 year-old. But after this transplant, she is going to get all those things back.”

Audrey’s tests confirmed she was a match. The final CT scan determines whether a donor is compatible based on the placement of an artery.

“We got the final call while at a basketball tournament,” Audrey said. “I just asked, ‘When can we schedule it?’”

Because Audrey was an adult, the surgery to remove one of her healthy kidneys would have to take place at Texas Health Fort Worth. The kidney would be walked across a sky bridge that connects the two hospitals and implanted in Jackie by a surgical team at Cook Children’s.

“The collaboration between our two hospitals is something I’m really proud of. I know the clinical teams on both sides of that sky bridge are really proud,” said Dr. Tariq N. Khan, transplant surgical director at Texas Health Fort Worth. “It’s about bringing the best resources together, with the single focus being the best possible care to the patients we serve.”

Audrey and Jackie scheduled their transplant for Aug. 27, 2019. The sky bridge cut the time from hours to just minutes for the donor kidney to be delivered. With Jackie feeling fatigued and unable to participate with her teams and work with the family’s ranch animals, the transplant could not have been scheduled at a better time.

“Toward the end I didn’t feel well at all,” she said. “I was ready by the time all the testing was done.”

Jackie checked in at Cook Children’s the night before to begin pre-op preparations and Audrey arrived at Texas Health Fort Worth the next morning, both of them with an entourage of family and friends.

Dr. Khan began Audrey’s surgery at 7 a.m. and by 10 a.m. he was transporting the kidney to Cook Children’s with the Fort Worth Life Gift transplant team.

Dr. Palmer and his team at Cook Children’s were waiting with Jackie prepped in the operating room. They knew as soon as the kidney was connected and producing urine that the transplant was successful.

The mother-daughter pair spent two months recovering Fort Worth, before heading back to ranch life. They have both recovered and Jackie is slowly easing back into her routine as a typical teenager.

“Jackie is feeling awesome. She is able to attend church, youth group, and 4H events. She is also keeping books for the varsity basketball team,” Audrey said. “She has begun to exercise again and has had her first ride [horses] since the surgery. While she’s not cleared to go back to school and regular sports yet, we anticipate that she will be cleared to do so soon. We are blessed beyond measure and are counting them out loud for sure.”

Though Audrey can’t physically donate again, she would make the same decision if she could go back, and encourages others to consider doing the same.

“Being a live donor was the best decision I’ve ever made. It’s a gift, really,” Audrey said. “It’s giving life twice.”

“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.

“So I found out I needed to get a kidney transplant due to my Lupus and was recovering,” Gomez wrote. “It was what I needed to do for my overall health. I honestly look forward to sharing with you, soon my journey through these past several months as I have always wanted to do with you.”

With the news of Gomez’s transplant, we thought it would be a good time to talk about a kidney transplant surgery. Cook Children’s has been performing transplants for years. The most recent was just two weeks ago on a toddler. Robert Gillespie, M.D, is a nephrologist and medical director of the program.

To get a better idea of what is involved with a kidney transplant, we talked with Blake Palmer, M.D., a member of Cook Children’s Urology Program and a surgeon who performs the kidney transplant operations.

1. What is a kidney transplant?

Dr. Palmer:  kidney transplant is when someone whose kidneys are not working for whatever disease process (i.e. -Lupus for Selena) can be on dialysis for renal replacement therapy and do the job her kidneys are not doing to maintain her life and health or they can have a kidney transplant. A kidney transplant means we remove a functioning kidney from a donor (can be living or recently deceased) and surgically place the kidney in the patient. This requires connecting the artery and vein of the kidney to the patient’s blood system and connecting the ureter from the new kidney to the patient’s bladder so that the new urine the kidney makes goes into the bladder so they can pee again.

2. How is the decision made that someone needs a new kidney and what goes into the decision making process?

Dr. Palmer: First, you have to have poorly functioning kidneys to the point you need to be on dialysis because they have failed. Second, you have to be otherwise healthy enough to benefit from the transplant and be healthy enough to undergo the surgery and recovery process.

3. Who can receive a kidney transplant at Cook Children’s?

Dr. Palmer: You have to be at least 10 kilograms (about 22 pounds) and healthy enough with renal failure. We go all the way up to age 18. Kids who weigh at least 10 kilograms are usually 2 years at the earliest.

4. How long is the surgery and what is involved in the recovery period?

Dr. Palmer: Surgery is 4 to 6 hours long and as described above requires connecting the transplanted kidney blood vessels to person’s blood vessels and connecting ureter to bladder.

Recovery is 5-7 days in the hospital on average.

5. Selena Gomez needed an operation because of lupus. What are the main causes for children needing a kidney?

Dr. Palmer: Lupus is a rare type of renal failure cause and even more rare in the pediatric population. It is more common in adults. In kids, about 50 percent are due to urologic causes that they were born with like vesicoureteral reflux, posterior urethral valves or bladder anomalies. The other 50 percent are kidney problems and those can be congenital dysplastic kidneys to disease that come on later in adolescents that cause kidneys to fail. It’s usually very different types of problems for grownups, where the main reasons adults need a kidney transplant are hypertension or diabetes.

6. Selena had her best friend donate a kidney. How do we decide who the donor will be?

Dr. Palmer: It’ s very rare to have a non-family member donate. For most patients the donor will be a cadaveric, recently deceased donor. How the donor is decided goes through the UNOS matching system. LifeGift is our local organ sharing and procurement non-profit who coordinates this process for our region. 

7. What do you hope people learn from this news?

Dr. Palmer: Awareness that people in all walks of life and all ages are in need of donated kidneys. That it is a safe and common practice. That non-family members can donate kidneys as well. I have done two previous non-family member donations at a previous transplant program. Our goal is that 40-50 percent of our donations will be living related because our patients will do slightly better with a living donated kidney than a cadaveric. Although, they can do very well from both.

To learn more about organ sharing, visit the United Network for Organ Sharing.

Related Story: 8 Facts About Lupus

About Cook Children's Urology/Genitourinary Program

Cook Children's has opened the doors to a state-of-the-art pediatric urology center dedicated to treating kids with many different genitourinary conditions. Click to learn about this groundbreaking program. 

About Nephrology

Whether your child needs inpatient care, outpatient care, dialysis or even kidney transplantation, our nephrologists provide continuous care for children with kidney-related problems. Click to read more.

* Photo from Selena Gomez's Instagram.