Parents Make the Best Advocates: Nailah's StoryChildren's Health
Nailah Combs was diagnosed with cor triatriatum at birth, a heart defect that can lead to heart failure.
“Never give up when it comes to your child’s health,” Danielle Combs says. “Keep fighting for what you think is right for them. You’re their best advocate.”
Danielle speaks from experience.
Four years ago, her daughter Nailah was diagnosed with cor triatriatum, a rare congenital (from birth) heart defect in which a membrane divides the left atrium into two chambers.
The membrane can vary in size and shape and may have one or more openings. In more severe cases of cor triatriatum, the membrane can obstruct blood flow in the left atrium, leading to shortness of breath, swelling of the legs, and lung congestion, among other symptoms. Surgical excision (removal) of the membrane usually resolves these symptoms with good long-term patient outcomes.
In Nailah’s case, surgery was not recommended because the opening in the membrane was considered large enough to allow blood flow—good news, of course, for both mother and baby.
But the initial good news wouldn’t last long. During the next few years, Nailah began to show symptoms her mother believed were related to the child’s cor triatrium diagnosis.
“Nailah was having leg pain, she was underweight because she wasn’t eating, and sometimes her skin would turn blue,” Danielle says, describing the effects of poor circulation or inadequate oxygenation of the blood. “She didn’t have much energy most of the time, either.”
The next steps
Alarmed by her daughter’s deteriorating health, Danielle consulted Nailah’s cardiology team at a surgical facility out of the Southwest Florida area. Informed her daughter’s symptoms were unrelated to her heart defect Danielle had Nailah undergo a neurological assessment.
Perhaps a brain or spine disorder was causing the toddler’s worsening condition. The results for that came back negative, same as those of a follow-up consultation with a gastroenterologist specialist.
“By then, I knew Nailah’s cor triatrium was causing her symptoms,” Danielle recalls. “Nothing else made sense. She was experiencing the exact symptoms of someone whose heart wasn’t functioning properly.”
Cor triatrium is one of the rarest forms of congenital heart defects, occurring in 0.1 to 0.4 percent of all congenital heart diseases. Healthcare professionals may lack expertise with the disease simply because it’s so uncommon. Unfortunately, as a result, children with rare diseases and their families often face healthcare challenges.
In April, 2022, Danielle reached out to the office of yet another pediatric cardiologist in Naples. The doctor had received excellent patient reviews. Understandably anxious, she hoped to receive an immediate callback for an appointment.
When it didn’t happen, Danielle took the first available appointment she could with a pediatric cardiologist at Golisano Children’s Hospital of Southwest Florida.
What she experienced on April 15, 2022, changed everything in her and Nailah’s life.
“When the heart doctor introduced himself to Nailah and me, I realized he was same doctor we tried to see in Naples,” Danielle recalls. “I don’t know where Nailah would be today without Dr. Onal.”
Dr. Tankut Onal, a board-certified pediatric cardiologist with Golisano Children’s Hospital Congenital and Pediatric Heart Center, took the time to listen to her during their visit together, Danielle recalls.
When a mother speaks from the heart about her child, Dr. Onal says, he listens. Or, as he put it, he listens “seriously.”
“I always believe mothers know more than anyone else,” he says. “They know what’s going with their child. They’re right there. I believe in them. I listen seriously.”
Danielle described her growing desperation with trying to find someone who would believe her that Nailah’s heart defect was causing her condition to fail.
By now, because Nailah was still underweight and still not eating properly, she’d had a gastronomy tube, or G tube, surgically placed for supplemental feedings to keep her weight steady.
Dr. Onal performed an echocardiogram on Nailah, which showed similar findings as all the other, previous tests, the ones growing Danielle’s frustration to find out what was going on.
“It didn’t show much evidence of blood flow obstruction,” Dr. Onal recalls. “I had other tests conducted, including a chest X-ray, but again, the main findings to explain Nailah’s symptoms were inconclusive, at best.
“I was concerned,” Dr. Onal. “I, too, believed Nailah’s failure to thrive was linked to her heart defect.”
Dr. Onal pursued other expert pediatric opinions and recommendations.
One colleague at University of Florida Health Shands Children’s Hospital, pediatric cardiothoracic surgeon Dr. Mark Bleiweis, recommended heart surgery for Nailah to remove the membrane on her left atrium.
Dr. Bleiweis’s recommendation came after a Who’s Who of cardiology experts reviewed Nailah’s case history. His team of experts included pediatric cardiology doctors and surgeons, cardiac intensivists, cardiovascular surgeons, and pediatric and congenital cardiologists.
Dr. Onal says, “Rare congenital heart diseases like cor triatriatum are not very common. Because there aren’t many kids who have this condition, you won’t find many facilities that have the experience of what to expect clinically in a case like Nailah’s. We were fortunate that Dr. Bleiweis and UF Shands Children’s Hospital had that experience.”
On July 12, Nailah underwent heart surgery. The membrane was removed in a surgery that lasted seven hours. When Nailah was well enough for discharge only three days later, Danielle took her back to their home in Cape Coral.
A week later, they saw Dr. Onal for follow-up. He reviewed Nailah’s post-surgery wound to make sure it was draining properly, reviewed her heart medication, and performed an EKG.
Mom reports Nailah’s leg pain stopped immediately after the surgery. “Her skin wasn’t turning blue like it used to, and she was laughing and smiling like she wasn’t in pain all the time again,” Danielle says.
In fact, during their second follow-up two weeks later, Dr. Onal says Mom’s “eyes were glowing because Nailah was playing with her toys again, running around the house, and acting like a kid should at her age.”
The surgery to remove the membrane had done the trick. After three years of failing to thrive, Nailah’s appetite had returned, she was eating more without the aid of the G tube, and her energy was back. During that second visit, Dr. Onal also stopped Nailah’s heart medication. It wasn’t needed anymore.
“We’ll keep following Nailah, but I don’t expect any long-term complications from the surgery,” Dr. Onal says. “I can’t even tell by examining the echocardiogram that she ever had cor triatriatum. It’s a remarkable and incredibly satisfying outcome.”
Nailah is happy and thriving thanks to successful heart surgery and Golisano Children’s Hospital Congenital and Pediatric Heart Center
'A mom knows'
In December, Danielle reports that the G tube was finally removed. That was cause for a celebration because it marked the end of a painful, three-year journey for Danielle to find out what was wrong with her daughter when she knew in her heart, of all places, what was happening.
“A mom knows more than anyone about her child,” Danielle notes. “That’s why you always keep fighting to do what you know is right by them. I’m so grateful for Dr. Onal. He believed in me and Nailah.”
Should your child require a heart procedure like Nailah’s, the Congenital and Pediatric Heart Center collaborates with surgical centers throughout Florida. After the procedure, that’s when Dr. Onal and his team shine with their expertise in post-surgery medical management, monitoring, and follow-up care of your child’s heart condition.
Follow-up care includes ongoing screening, evaluation and coordinated care from a multidisciplinary team of pediatric experts who offer your child the best opportunity for intervention and treatment, so they can reach their fullest potential.
Best of all, the Congenital and Pediatric Heart Center is close to home, where you and your child belong.