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The cry of a newborn is impossible to miss.
It’s loud, considering how small its source is, and the pitch – that sharp, piercing note of shock and distress – draws your attention fully and immediately. As it’s designed to. But in a delivery room, where staff and doctors are totally used to hearing that cry, there’s a much more distressing sound that can happen too, and it's what accompanied Adalyn Frazier when she was born in January: silence.
Ady (pronounced “Add-ee”) was born with a condition known as CDH, or Congenital Diaphragmatic Hernia. This means her intestines and liver were in her chest. It’s more common than you’d think – 1 in 2,500, or about as common as cystic fibrosis. It’s dangerous, with a mortality rate estimated at 40-62%. It was also a complete shock to her parents, Saddy (pronounced “Say-dee”) and Justin. Up until the delivery, Saddy had experienced a completely normal pregnancy, and the Fraziers had a healthy child, Ady’s big sister, Emory, already.
So it wasn’t until the birth, when her UNC REX Hospital doctors saw that newborn Ady wasn’t breathing, that the journey really began. Ady was quickly moved to the NICU. There, doctors soon realized she needed even more intensive care – because the CDH had forced her abdominal organs to push into her chest cavity while she was in the womb. As a result, Ady’s lungs never had a chance to fully form.
At that point, it was quite clear that Ady would need the kind of complex and highly specialized care that only a handful of places in the United States could provide. Ady would need the most sophisticated equipment, the most skilled surgeons, and an elite team of professionals who worked around the clock. Thankfully, one such place was just a few miles away in Chapel Hill.
Within hours, Ady was airlifted to N.C. Children’s Hospital.
Often, one of the first steps in treating a baby with CDH is a procedure called Extracorporeal Membrane Oxygenation, or ECMO for short — which means a heart and lung bypass. A tube is inserted into the baby’s jugular vein, and her blood begins flowing out of her body and into a machine, where it’s scrubbed, oxygenated and filtered. Then it’s pumped back into the baby’s own circulatory system through another tube. The ECMO apparatus is typically many times the size of its patient.
During Ady’s treatment in the weeks after her birth, she had multiple strokes, caused by her narrowed carotid artery on her left side. The strokes led to seizures, and there was extensive damage to her vocal cords. The doctors explained to Saddy and Justin that, even with Ady’s diaphragm repaired and her organs put into their proper locations, speaking or eating would likely be very difficult for her. The medications needed to prevent further seizures would temporarily paralyze Ady, and she would need to stay on them for weeks, if not months.
But through a series
of procedures and happy discoveries,
Ady began to progress.
Saddy and Justin are expecting their third child,
a boy, in March. So far everything seems to be progressing normally. Doctors are keeping a close eye, though, just in case. If Ady’s little brother — and Ady’s parents — need to go through another journey, UNC Children’s will be by their side.
The team at UNC Children’s, including surgeons, intensive care doctors, neurologists, RNs, and nurse practitioners, fought alongside Saddy and Justin to treat Ady. They performed numerous complex surgeries, provided around-the-clock care, and took time to ensure that Ady’s parents understood every aspect of what was happening.
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