Kyleigh Kista underwent three open-heart surgeries in the first 18 months of her life.
But instead of progressing, her health was rapidly deteriorating when she reached the age of 3. Her doctors said there was nothing else they could do except make her a candidate for a heart and lung transplant.
This was shocking news for her parents, Serina and Gerald. “To get such comments, it put us in a state of panic,” Serina recalls. “It’s the worst feeling: that you don’t have enough time to save your child.”
Still, the couple weren’t ready to give up hope. They had never made it through those three surgeries, other procedures, and several life-threatening respiratory infections and viruses, including one that caused Kyleigh heart failure. Their journey meant continuing to seek a treatment that would finally allow their daughter to be healthy.
A doctor’s message started a journey
Kyleigh was born with tetralogy of Fallot (TOF) with pulmonary atresia and major aortopulmonary collateral arteries (MAPCA), a type of congenital heart disease 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 shrinking over time, decreasing the amount of rich, oxygenated blood throughout his body. She also had a hole in the wall that separates the right and left heart pumping chambers, an abnormality known as a ventricular septal defect (VSD).
Serina was suspicious that Kyleigh might need a fourth surgery at a hospital in their home country of South Africa. But she was comforted by a post on the profile page of Dr. Ryan Callahan, a pediatric interventional 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 contacted the next day and requested all documentation of Kyleigh’s treatment.
As Serina communicated with Dr. Callahan, the local hospital offered a heart and lung transplant as Kyleigh’s only chance for improvement, but that would have to be done outside the country as surgeons in South Africa don’t had not performed the procedure on a child. Yet even though Serina and Gerald found a hospital that specialized in pediatric transplants, they 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.
Appropriate treatment and TLC
A transplant was not the only option. Dr. Callahan and Dr. Aditya Kaza, a heart surgeon at the Benderson Family Heart Center, quickly told Serina and Gerald that the departments of heart surgery and cardiology could instead work together to repair TOF with pulmonary atresia.
Drs. Callahan and Kaza went into great detail every step of how they would deal with Kyleigh, responding to Serina’s emails within hours, she recalled. It was a level of knowledge and accessibility that she and Gerald had never experienced. This gave them confidence that, even with Kyleigh’s deteriorating health, she still had a good chance of finally getting proper treatment.
Over a period of days this spring, shortly after Kyleigh’s fourth birthday, Dr. Callahan performed cardiac catheterization using balloon dilation and placement of a stent to open up her narrow blood vessels. Next, Dr. Kaza connected his MAPCAs to his pulmonary arteries, a procedure known as single-focus. Kyleigh will return to Boston Children’s next year to have the VSD repaired. It’s a trip she’s been looking forward to because of the positive experiences she’s had this year.
“The way Dr. Callahan, Dr. Kaza and all the nurses talk to her – it’s with so much love and affection,” Serina says. “They think about everything a child goes through.”
A much-needed recovery for Kyleigh
Kyleigh has been nothing but energetic and happy since the surgery. She loves playing with her 14-year-old brother, Ethan, and her 7-year-old sister, Hannah. She likes to sing, dance, color and solve puzzles. Her goal is to go to kindergarten in a few months.
Serina and Gerald will always be grateful for the care Kyleigh received at Boston Children’s. “It wasn’t for her to go anywhere else,” Serina says. “She was supposed to be in the hands of Dr Callahan and Dr Kaza to save her life. Many people tried to give her the treatment she needed, but Boston was where she was supposed to come. It was fate.
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