Joe and Emily Wilson with their first son, Tyler, who has spent a lot of time hospitalized at Akron Children’s Hospital. They are expecting twins in July and are the feature family for Walk for Babies, a fundraiser for the neonatal intensive care unit (NICU).
When Tyler Wilson was born, his internal organs were like a jigsaw puzzle with pieces in the wrong places.
His abdominal organs, including the spleen, part of his stomach and liver, and most of his bowel, were pushed up into his chest. The incursion into the chest cavity stunted development of Tyler’s lungs and forced his heart out of position.
“They could hear his heartbeat through his right armpit,” his father, Joe, said.
Tyler is Joe and Emily Wilson’s first child. The couple from Louisville in Stark County learned while Tyler was in utero that he had a birth defect called congenital diaphragmatic hernia (CDH). His diaphragm muscle, which separates the chest cavity from the abdomen, was not completely formed, leaving a large hole. The condition affects about 1 in every 5,000 births. Tyler’s case was severe and it triggered life-threatening complications.
Doctors in the Neonatal Intensive Care unit at Akron Children’s Hospital put Tyler on a heart-lung bypass machine shortly after birth.
“When lungs are small like that, the blood supply to the lungs is abnormal,” said pediatric surgeon Dr. David Andrews, who performed several surgeries on Tyler. “They tend to have high blood pressure within the lungs, which interferes with circulation.”
Joe and Emily would spend much of Tyler’s first year at Akron Children’s Hospital. The first surgery — to patch the hole — took place when Tyler was 16 days old. His intestines were kept outside of his body for a week until a second surgery to put them in place.
Tyler would spend 4 ½ months in the NICU, and another 3 ½ months in Pediatric Intensive Care Unit because of complications.
He needed a feeding tube to his belly and another called a J-tube to deliver nutrition into the small intestine.
“His stomach was so out of place and so small, it couldn’t handle anything,” said Emily.
Though he still has a feeding tube and developmental delays, Tyler at age 3 has made a remarkable comeback. On a recent afternoon, he was whirl of activity as he scampered from toy to toy in the living room. He just started walking a few months ago and he’s slowly learning how to eat. He receives physical, occupational, speech and feeding therapy.
Emily, who is pregnant with twins, will talk about the family’s journey as a featured speaker at the 2018 Walk for Babies fundraiser on October 7. The 12th annual Walk for Babies begins at 9 a.m. at Canal Park.
She’ll talk about how their faith and care and support of hospital staff helped them through the crisis.
“There were times when things could have gone the other way,” said Emily, recalling Tyler’s poor prognosis and many setbacks, including an infection that almost killed him. “There were so many times the doctors said the treatment is just not working, and then he would turn corners overnight.
“Never give up hope,” she said.
Dr. Andrews said Joe and Emily have been exemplary.
“They’re very nice people and they’ve done a great job taking care of a medically complex and medically fragile child,” he said. “Tyler is making good progress.”
Joe delights in the normality of keeping up with his high-energy son.
“He’s exhausting,” he chuckled. “I remember the neonatologist told us our goal was to take our baby home and be exhausted.”
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