Four days before a scheduled Caesarean-section, Ashley Neil of Vestavia Hills, Alabama, learned that her baby girl, Parker, would have only minutes to live. An ultrasound showed Parker had a severe heart defect that is virtually always fatal. But through fastidious planning and an unprecedented approach to treatment, Parker survived.
Parker’s heart has only three chambers instead of the normal four. In addition, she had an intact atrial septum which blocked the flow of oxygenated blood to the rest of her body. “It’s universally fatal within the first minutes of life,” pediatric cardiovascular intensivist Jeffrey Alten, M.D. said. “You have to open that septum. Nothing else works.”
The only way to save Parker was to place her on extracorporeal membrane oxygenation (ECMO) seconds after birth. ECMO is a heart-lung bypass machine which oxygenates the blood and pumps it through the body. Then, she would immediately need surgery to unblock the septum – all within minutes of delivery.
The challenge in most hospitals is that all of the components necessary to provide this life-saving care are located in different areas – often different floors – of the facility. But when the Russell Building at Children’s of Alabama was built in 2012, the plans included a 40-foot hallway connection from the Joseph S. Bruno Pediatric Heart Center on the fourth floor to the Women and Infants Center at the University of Alabama at Birmingham (UAB) where so many high-risk babies are born. With labor and delivery, critical care and cardiac care in close proximity to one another, precious time is saved when newborns are fighting for their lives.
Once Parker’s medical condition was identified, a team of intensivists, perfusionists, surgeons, nurses and anesthesiologists met with specialists in maternal/fetal medicine and staff of the UAB Regional Neonatal Intensive Care Unit to make a plan for Parker’s birth and surgical care. To give Parker the best chance of survival, the team decided to set up a cardiovascular operating room in the hallway outside the birthing suite. There, the baby would be placed on ECMO and immediately wheeled over to one of Children’s heart catheterization labs. “There were 20 doctors and nurses in the room,” Alten said. “All had a very defined role.”
On Nov. 9, 2015, Parker was born by C-section and the team sprang into action. “She cried once and went completely blue so we inserted a breathing tube, started IVs to resuscitate her and performed an ultrasound of her heart to confirm the diagnosis,” Alten said. “Within five minutes she was on ECMO and within 10 minutes, she was stable.”
As planned, the baby was transferred directly to the cath lab, where the planned procedure was successfully performed. Doctors were able to wean her off the ECMO machine after a couple of days. Over the next several weeks and months, Parker underwent two more heart surgeries and experienced multiple complications. But after five months in the hospital, Parker was healthy enough to be discharged. “We brought her home on oxygen and a feeding pump. She’s on 12 kinds of medicines that she has to take three times a day. We have to watch her color, her breathing,” Neil said. “There are a lot of little factors you have to be aware of.”
Because of the detailed collaboration of the medical team, the availability of advanced technology and the single platform of care provided by the design of the Children’s facility, Parker has already beaten the odds. “None of us expected her to survive her hospital stay,” Alten said. “And she’s still not out of the woods. In fact, only about 30 percent of these children make it to age 1 because of the associated severe lung disease that is associated with the heart defect. But she’s learning to eat, she’s gaining weight, smiling and interacting.”
Here mom said she’s a fighter who has already made an impact on friends and family. “I’ll never look at the shape of a heart the same way again,” Ashley said.
Parker has already beaten the odds, learning to eat, gaining weight, smiling and interacting.
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