When Melissa and Marc arrived at the hospital for the birth of their first child, Makayla, they couldn’t have anticipated the challenging journey that lay ahead for their family.
Right after birth, Makayla experienced breathing difficulties that turned her complexion blue and she was immediately rushed to Rady Children’s Neonatal Intensive Care Unit. Only hours later, tests revealed a diagnosis of Tetralogy of Fallot—a rare condition seen in less than 20,000 babies each year in the U.S. and caused by a combination of four congenital heart defects.
“I had no prior knowledge of it during pregnancy, but once Makayla was diagnosed, they rushed her to Rady Children’s,” says Melissa. “From there, it was one thing after another. It was very traumatic for us.”
At 2 weeks old, Makayla underwent the first of three major surgeries to repair her heart. At 10 months old, she had reached the final surgery, but challenges left her physicians and family unsure of how well she would recover. Following the procedure, Makayla needed to be intubated and placed on an extracorporeal membrane oxygenation—or ECMO—a machine for cardiac and respiratory support and spent nearly two months in Rady Children’s ICU.
“Makayla lost half of the function in her heart—something we are still working on with specialists to this day—but she eventually made her way out of the ICU, on to less intensive inpatient care, and was able to come home,” says Melissa.
Physical, feeding, respiratory and speech therapy have also been critical to enabling Makayla to thrive.
“With everything she went through and being in the hospital for the first 18 months of her life, Makayla didn’t walk until 2 and a half; didn’t really talk until just after that; and couldn’t eat by mouth after her final surgery,” explains Melissa. “There were a lot of obstacles that she had to overcome, and they were all linked together with her development. She would not have been as successful at strengthening these functions if it wasn’t for Rady Children’s exceptional team of therapists.”
Makayla’s parents regularly experience other parents’ disbelief when they share any piece of the now 7-year-old’s story. Her energy and vitality in school, dance and all she puts her mind to blows them away, too.
“She’s a force,” says Melissa.
Makayla still receives regular follow-up care at Rady Children’s as the family’s journey continues onward. She’d like to be a police officer when she grows up, but for now she is simply enjoying the full childhood she has arrived at through her remarkable strength and the support of her family and care team.
“We live in the moments in between, just trying to allow Makayla to have the fullest, most quality, most successful life while knowing anything that comes up could take us down another road,” shares her mom.
“If the end of a road is not what you think it’s going to be or not what you planned for, there’s another road. There’s always a trail. There’s always a hill. There’s always so many things.”
Ranked the #1 pediatric heart program on the West Coast and among the top 3 in the nation for cardiology and heart surgery, Rady Children’s Heart Institute drives advancements in treatment for children facing cardiac disease. The Heart Institute team meets patients and families with open arms, providing holistic care fueled by the latest technology, techniques and research. Discoveries happening every day at the Heart Institute are furthering the lifesaving possibilities of the field and helping young patients lead healthier lives than ever before.
