Blogger Kayte Ray, a mom of two, was five months pregnant with her son when she and her husband learned the shattering news that he had a life-threatening birth defect known as a congenital diaphragmatic hernia (CDH).
CDH is when a baby’s diaphragm, the muscle that separates the chest from the abdomen, fails to fully form during prenatal development, leaving a hole that allows the organs meant to stay in the belly (the liver, stomach and intestines) to move into the chest, impacting the growth and development of the lungs.
While there’s no current statistics available in SA, out of 4 million babies born in the US, 1 600 will be born with CDH, and out of those 1 600, only half will survive.
In a moving blog published by Café Mom, Kayte shares that when she and her husband first received their baby’s diagnosis, they weren’t given much hope. “Our surgeon told us if Jax survived, and his chances were not good, we would not take a deep breath for at least the first two years of his life. A Neonatal Intensive Care Unit (NICU) nurse also asked why I was having a baby shower for a baby that would most likely not make it…”
The couple’s maternal foetal doctor asked them whether they’d like to terminate the pregnancy. “Not only were we up against a devastating diagnosis – we felt we were up against seasoned doctors who questioned our decision to give our son a chance in life.”
After what Kayte describes as “the scariest nine months of my life” she says she prayed her baby wouldn’t cry during delivery “because a baby with bad lungs introduces unwanted air.”
While she and her husband had been primed for how the birth would go, she says nothing could have prepared her for it in real-time. While still connected to her via the umbilical cord, she says, he was immediately intubated. “My hubby didn’t get to cut the cord or place our new baby in my arms. Instead, he was taken to an adjacent room to be prepped for the NICU.”
As she was receiving her stitches, Kayte says her baby was wheeled past her. All she can remember “is watching the nurse methodically pump a bag, effectively breathing life into my son, one squeeze at a time.”
Kayte recounts that she finally got to meet her son five hours later. “There were no less than 15 doctors, nurses and ultrasound technicians surrounding his bedside. He was attached to cords, wires, tubes.”
She says that when she saw her son from across the room she threw up. “It was the most visceral reaction I’ve ever had to anything in my life. Seeing my hours-old baby hooked to machines to keep him alive was too much to bear.”
Six hours later she had to sign consent forms to put her baby on life support. “We need permission to do whatever it takes to save your son’s life,” the doctor told her. “Knowing my son was going to be put on heart and lung bypass was devastating,” Kayte says.
Beating the odds
The next 13 days were some of the hardest in their lives, she says. “He faced a couple of infection scares…but he crushed it.”
Then, when he was just 20 days old, he had his third surgery to repair the hole in his diaphragm.
Just eight weeks later, he “graduated’ from the NICU of the Children’s Hospital in Philadelphia with a simple feeding tube – a miracle!
Today Jax is a thriving two-year-old, and thanks to several months of post-hospital PT, OT and speech therapy, he is “developmentally up to speed with no feeding tube, oxygen or meds required.”
“He loves sports, is obsessed with animals and adores his big sister,” Kayte says. “He’s tiny but fierce, and has just recently noticed his scar, which he refers to as his ‘strong boo-boo.’”
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