Thursday is dedicated to bringing awareness to a little-known condition in newborns that’s actually fairly common. Just in time for Congenital Diaphragmatic Hernia (CDH) Awareness Day, an Edwardsville family is sharing its story in hopes it will encourage other families facing the same diagnosis.
At their 19 week ultrasound, the Shouse family had their world rocked.
“We really didn’t care as much about the gender. But really wanted a healthy baby. And that’s when we found out he was sick,” said Kelly Shouse.
Her son, Logan, was diagnosed with CDH, which is when a hole forms in the diaphragm and things that belong in the abdomen, like bowel, spleen, kidney, and liver travel up and sit in the chest, squishing the lungs.
“So you end up with small lungs, also known as pulmonary hypoplasia,” said Dr. Jesse Vrecenak, MD, a pediatric surgeon at St. Louis Children’s Hospital. “The second issue is the blood vessels between the lungs and heart are abnormally thickened and reactive, also known as pulmonary hypertension. Both will impact a baby’s ability to breathe and its lung capacity.”
Five days after he was born, Logan had a big surgery to put everything back in place. On day 14, his mom got to hold him for the first time. Within a month, they were able to go home. Now, two years later, he is doing phenomenal and doctors expect him to have a normal childhood, but that is not always the case.
CDH occurs in one in every 2,000-5,000 live births. Dr. Vrecenak says in 10 percent of the cases, there is little they can do to save the baby.
“Ten percent will be so severely affected by pulmonary hypoplasia or pulmonary hypertension that they won’t be able to be resuscitated so they won’t survive the delivery room or the period shortly thereafter,” she said.
Dr. Vrecenak said another 10 percent will be so mildly affected, they will have a straightforward course. Most cases are somewhere in between.
Many of the children with CDH will also have neurodevelopmental problems. Now, doctors at St. Louis Children’s Hospital are part of a national study to figure out how CDH and the other issues are connected.
In the meantime, Logan’s parents are trying to encourage other families struggling with the little-known diagnosis.
“I think the big thing is, even though the diagnosis isn’t the best, I think staying positive, being hopeful, finding the right treatment for you, the right hospital for you, I felt so supported here,” said Shouse.
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