Kyleigh Kista had three open-heart surgeries in just the first 18 months of her life.
But instead of progressing, her health was rapidly deteriorating by the time she reached 3. Her doctors said there was little else they could do, except make her a candidate for a heart and lung transplant.
It was shattering news for her parents, Serina and Gerald. “To get such feedback, it put us in a state of panic,” Serina recalls. “It’s the worst feeling: That you’re running out of time to save your child.”
Still, the couple wasn’t ready to relinquish hope. They had never done so throughout those three surgeries, other procedures, and several life-threatening respiratory infections and viruses, including one that caused Kyleigh to have heart failure. Their journey meant continuing to look for treatment that would finally give their daughter good health.
A doctor’s message started a journey
Kyleigh was born with tetralogy of Fallot (TOF) with pulmonary atresia and major aortopulmonary collateral arteries (MAPCAs), a type of congenital heart condition in which there was no pulmonary valve connecting her right ventricle to her lungs, forcing blood to find its way to the lungs through smaller arteries. Some of Kyleigh’s MAPCAs were underdeveloped, with one of them narrowing over time, lessening the amount of rich, oxygenated blood throughout her body. She also had a hole in the wall that separates the right and left heart pumping chambers, an anomaly known as ventricular septal defect (VSD).
Serina felt wary about the possibility of Kyleigh needing a fourth surgery at a hospital in their home country of South Africa. But she was comforted by a message on the profile page of Dr. Ryan Callahan, an interventional pediatric cardiologist at Boston Children’s Benderson Family Heart Center, saying he is always accessible and an advocate for his patients. She emailed him, explaining Kyleigh’s condition and her surgeries and hospitalizations. Dr. Callahan reached out the next day and asked for all documentation on Kyleigh’s treatment.
As Serina communicated with Dr. Callahan, the local hospital proposed a heart and lung transplant as Kyleigh’s only chance of improvement, but it would have to be done outside the country because surgeons in South Africa had not performed the procedure on a child. Yet, even if Serina and Gerald found a hospital that specialized in pediatric transplants, they were worried about the survival rate. Serina recalls: “I just prayed, ‘No, that can’t be the only option. You can’t give me just a few years with my daughter.’”
Proper treatment and TLC
A transplant wasn’t the only option. Dr. Callahan and Dr. Aditya Kaza, a Benderson Family Heart Center cardiac surgeon, soon told Serina and Gerald that the Departments of Cardiac Surgery and Cardiology could instead work together to repair the TOF with pulmonary atresia.
Drs. Callahan and Kaza explained in great detail every step of how they would treat Kyleigh, responding to Serina’s emails within hours, she recalls. It was a level of knowledge and accessibility she and Gerald hadn’t experienced. It gave them confidence that, even with Kyleigh’s health worsening, she still had a good chance of finally getting proper treatment.
Over a span of a few days this spring, not long after Kyleigh’s fourth birthday, Dr. Callahan performed a cardiac catheterization using balloon dilation and stent placement to open her narrow blood vessels. Next, Dr. Kaza connected her MAPCAs to her pulmonary arteries, a procedure known as unifocalization. Kyleigh will return to Boston Children’s next year to have the VSD repaired. It’s a trip she’s looking forward to because of the positive experiences she had this year.
“The way Dr. Callahan, Dr. Kaza, and all the nurses speak to her — It’s with so much love and affection,” Serina says. “They think about everything a child is going through.”
A much-needed recovery for Kyleigh
Kyleigh has been nothing but energetic and happy since surgery. She loves playing with her 14-year-old brother, Ethan, and 7-year-old sister, Hannah. She enjoys singing, dancing, coloring, and completing puzzles. She aims to attend kindergarten in a few months.
Serina and Gerald will always be grateful for the care Kyleigh received at Boston Children’s. “It wasn’t meant for her to go anywhere else,” Serina says. “She was meant to be in the hands of Dr. Callahan and Dr. Kaza to save her life. There were many people who tried to give her the treatment that she needed — but Boston was the place that she was meant to come to. It was destiny.”
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