Peyton McNeel is a happy baby. She loves talking to elephants at the zoo, watching her family’s dog and cat, and listening to her dad, Andrew, play guitar.
Behind Peyton’s glowing smile, dimpled chin and dark hazel eyes is a fighting spirit as innate as her affability.
“Peyton is my miracle,” said her mother, Jacqueline McNeel. “I am and will forever be in awe of her courage and strength. She’s my little warrior.”
Before Peyton was 7 months old, she had spent nearly half her life at Children’s Memorial Hermann Hospital, battling a life-threatening blood disorder and undergoing three surgeries to correct a congenital heart defect.
Preparing For Medical Challenges
Jacqueline and Andrew knew early in pregnancy that Peyton would face a number of health challenges after she was diagnosed with Trisomy 21, a genetic condition commonly known as Down syndrome.
During prenatal testing, it was also discovered that Peyton had a complete atrioventricular canal (CAVC) defect, a congenital heart condition that would require open heart surgery when she was only months old. Jacqueline’s maternal-fetal medicine provider in Clear Lake referred her to The Fetal Center at Children’s Memorial Hermann Hospital, where the McNeels met with a fetal cardiologist who explained their child’s condition.
“They did a fantastic job educating us about Peyton’s condition and the prognosis in correcting it,” Andrew said. “The prenatal diagnoses were a lot to take in, but it helped to have medical professionals lay out the facts for us and assure us of what Peyton would be facing.”
CAVC defect is characterized by a hole in the middle of the heart that allows oxygen-rich and oxygen-poor blood to mix, inhibiting the heart’s chambers and valves from properly routing blood through the body. If left untreated, CAVC can lead to heart failure.
During the 34th week of pregnancy, the McNeels met with Jorge Salazar, MD, co-director of Children’s Heart Center at Children’s Memorial Hermann Hospital to discuss the plan for repairing Peyton’s CAVC defect.
“I can’t put into words how incredible Dr. Salazar was in giving us confidence about repairing Peyton’s heart defect,” Andrew said. “The conversation set the stage for a fantastic working relationship.”
But nothing could prepare the McNeels for what came later that day.
An Unexpected Birthday
An hour after the McNeels met with Dr. Salazar, Jacqueline underwent a scheduled ultrasound that revealed Peyton was restricted in the womb. There was a concern Peyton was not receiving 100 percent of the blood supply she needed from the placenta. A C-section delivery was scheduled for later that day.
Peyton was born six weeks premature.
“That was a complete surprise but everything went great with the procedure and the birth,” Andrew said.
Peyton was taken to the hospital’s neonatal intensive care unit (NICU), where the goal was to stabilize her health and set her on a trajectory to grow and gain strength in preparation for her CAVC defect repair.
Peyton’s First 83 Days
Steady progress came to a jarring halt five-and-half-weeks into Peyton’s NICU stay. A form of leukemia specific only to children with Trisomy 21, called transient myeloproliferative disorder (TMD), caused Peyton’s white blood cell count to spike to life-threatening levels.
“That was probably the scariest moment of our lives,” Andrew said.
Peyton’s blood thickened with the abundance of immature white blood cells brought on by TMD. Her body swelled as it retained fluid, causing a drastic weight gain and enough pressure on her internal organs that it impacted their function.
“I knew early on that Peyton had a heart defect that would need to be repaired but nothing prepared me to watch my baby in critical condition only weeks after birth,” Jacqueline said. “Our family, friends and community sustained us during the most difficult time of our lives. I lived second-by-second in those difficult days.”
Peyton was moved to the pediatric intensive care unit (PICU), where pediatric oncologist Michael Roth, MD, an associate professor of pediatrics at The University of Texas MD Anderson Cancer Center, oversaw a five-day regimen of chemotherapy to treat the TMD. A drain was placed in Peyton’s abdomen to relieve pressure.
Over the next six weeks, Peyton recovered with at least one of her parents by her side at all times. Peyton also underwent a preliminary open heart procedure with Dr. Salazar, who placed a band around her pulmonary artery to restrict blood flow to her lungs in an effort to improve her ability to grow before CAVC defect repair.
After 83 days in the hospital, Peyton went home for the first time.
Peyton Returns for Heart Repair
Living outside of a hospital setting was an adjustment at first for Peyton and her family.
“She had always been hooked up to machines that monitored her and then those weren’t there at home,” Andrew said. “We eventually found our groove and Peyton did fantastic at home.”
The McNeels were able to spend their first Thanksgiving and Christmas at home as a family. Peyton continued to grow. Surgery to correct the CAVC defect was scheduled for Jan. 21, 2019, when she was 7 months old.
Dr. Salazar was able to patch the hole caused by the CAVC defect in a seven-and-a-half hour surgery, separating the valves and chambers and restoring normal blood flow.
“She was smiling again less than 24 hours after surgery,” Andrew said. “She’s one tough cookie.”
A week later, Peyton had a pacemaker implanted to regulate any abnormal heart rhythms. Following recovery in the PICU, Peyton returned home with her parents.
Living At Home, As a Family
Peyton’s health has continued to improve at home in the two months following her surgery. She no longer needs oxygen assistance and recently reduced by half the amount of medications she needs to take.
“I love watching Peyton reach milestones at home,” Jacqueline said. “She is resilient. It has been an absolute joy for my family to get back to a sense of normalcy and to see Peyton doing so well.”
During Peyton’s extended time in the PICU, Jacqueline and Andrew dreamed of taking Peyton to the Houston Zoo, part of which could be seen from their daughter’s hospital room.
“When we finally made that dream come true and walked the zoo grounds with Peyton, we felt an enormous amount of gratitude,” Jacqueline said. “It was a beautiful day. I had my family together, at last.”