Patent Ductus Arteriosus: Zylah’s Story
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Before Zylah was even born, she received a miraculous birthday gift. It wasn’t a frilly dress or a pretty doll, but a heart procedure developed for extremely premature babies, just like her.
A fighter from the start, Zylah was born on April 28, 2019, at less than 26 weeks gestation, weighing only 1 lb. 9 ozs. At the top of her list of health issues was a hole in her heart, known as patent ductus arteriosus (PDA), which was adding stress to her already extremely underdeveloped lungs and other organs.
Just weeks after Zylah’s birth, doctors at Children’s Hospital of Philadelphia (CHOP) used the Amplatzer PiccoloTM Occluder — a self-expanding wire mesh device the size of a pea — to close the hole in her heart and ultimately save her life. This cutting-edge procedure had gained approval by the FDA for use in PDA correction only in January — three months before Zylah’s early arrival.
“She was so tiny,” recalls Zylah’s mother, Zakira. Before the Piccolo procedure, there were times Zakira was desperately afraid for her daughter’s survival, and many nights that fear kept the 21-year-old away from the hospital. “Sometimes it was just too hard to be there and see her like that,” says the first-time mom.
Today, Zylah is thriving. She's a year old, weighs about 17 pounds and is growing stronger each day. Zakira says she never tires of cuddling her sweet girl and both she and Jamir Green, Zylah’s proud dad, are so thankful to CHOP for making it happen.
“I love CHOP,” says Zakira.
“CHOP saved my baby’s life.”
Zylah’s early arrival took her mom by surprise. Zakira had a few months of morning sickness, but otherwise she had an easy pregnancy. At 15 weeks' gestation, doctors told Zakira she had a thin cervix, but it wasn't cause for alarm, just regular monitoring.
Zakira discovered she was having a daughter at a gender-reveal party in March. When the pink smoke bombs announced Zylah’s gender, Zakira was thrilled. But she certainly wasn’t expecting to meet her baby a month later – especially since she wasn't due until August.
After two days of back pain, Zakira knew something was off. She was making more frequent trips to the bathroom, felt cramping in her legs, and unusual pressure in her lower belly. In the early morning hours of April 28, Zakira woke her mother, and the two drove to a hospital just a few miles from their Chester, Pa., home.
Minutes after they arrived at the hospital, Zylah made her entrance into the world. “She actually delivered herself,” recalls Zakira.
Before Zakira even had a chance to hold her baby, Zylah was whisked off to the Neonatal Intensive Care Unit where she was diagnosed with a host of medical issues, the most severe of which was a PDA. PDA occurs when a naturally occurring hole in the aorta — the ductus arteriosus — fails to close after birth. The condition affects up to 20 percent of preemies and occurs twice as often in girls as in boys.
Fortunately for Zylah and other babies like her, clinicians at nearby Children's Hospital of Philadelphia had recognized the need for a new way to help extremely premature babies born with PDAs, and was the leading center in a national clinical trial for the new Piccolo device. Previously, only two federally-approved devices existed to “plug” holes in the hearts of pediatric patients. Neither was small enough to help extremely premature newborns like Zylah.
It comforted Zakira to know that her baby's doctors in Chester were talking with leading specialists at CHOP. But before her daughter could be considered for the new therapy at CHOP, Zylah needed to get stronger. In mid-May, Zylah was transferred to CHOP.
The next day, Matthew Gillespie, MD, attending cardiologist and medical director of the Cardiac Catheterization Laboratory at CHOP, carefully inserted a catheter into Zylah’s groin and threaded it up to her heart. He then inserted the Piccolo device to close the hole in Zylah's heart, careful not to restrict a healthy blood flow. The 90-minute, minimally-invasive procedure went smoothly.
After the procedure, Zylah remained at CHOP while her body healed, as she gained weight and until she could maintain her temperature. During Zylah's hospital stay, doctors at CHOP regularly updated her mom about her baby's condition.
The ongoing communication helped alleviate Zakira's fears since she was not able to immediately hold and comfort her baby. The first time Zakira got to hold her baby was 15 days after birth.
Finally, on August 21, Zylah went home. She had spent 123 days in the hospital.
Doctors advised Zakira that because of her daughter's prematurity, surgery and lengthy hospital stay, she may not reach all her developmental milestones on time. But Zakira proudly reports that her daughter holds her head high, keeps her eyes steady and finds her mouth with her fist all on her own, just like most other babies her age.
“She is doing great. It’s like nothing ever happened.”
Other than vitamins for nutrition, Zylah is off all medications. The baby got a good report at her most recent doctor’s visit, and barring any problems, doctors will recheck her heart after her first birthday and determine if any follow-up procedures are needed.
Zakira loves her new role as mom. Like the words stitched onto her slippers, Zakira believes in “girl power” — something she wants to instill in her daughter. Her wish for Zylah is to grab every chance at a normal, healthy and happy life.
“I want her to have everything in the world,” says Zakira.