CLEVELAND – When an unborn child is diagnosed with a birth defect parents want the best doctors in the world -- and the Cleveland Clinic has one of the best. A Middleburg Heights couple got that terrible news and the doctor they saw at the Cleveland Clinic has treated 400 children like her.
Now fve-month-old Natalie Bohach's parents Jen and Patrick found out that their daughter had a birth defect called congenital diaphragmatic hernia at Jen’s routine 36-week ultrasound.
“My doctor was telling me about diaphragmatic hernia and I had never heard of it before so it was very shocking because everything up until that point had been totally normal,” Jen said.
“The stomach is kind of up in the chest, the spleen is up in the chest, all of the colon and all of the small intestine, fortunately though most of the liver is down in the abdomen,” explained Dr. Darrell Cass, Director of Fetal Surgery at the Cleveland Clinic.
The Cleveland Clinic brought in Cass in November of 2017 to head up the new Fetal Surgery Team at the hospital. Cass is known around the world for his work in fetal surgery and diagnoses.
Diaphragmatic hernia is when there is a hole in the diaphragm and the organs go up into the lung area.
“There’s actually a hole in the diaphragm muscle. The diaphragm is supposed to be a solid muscle that separates our chest from our abdominal cavity,” Cass explained.
It is problematic because it can prevent the lungs from growing and developing fully and can also lead to all kinds of complications later in life.
“Overall as many as 20% of children with this condition don’t make it. They die from it. So that’s a lot, that’s 1 in 5,” said Cass.
The Bohach’s went to Dr. Cass and his team planned every detail of her delivery for May 14, 2018. Thankfully, Natalie’s case was not as bad as many of the other cases Cass has treated.
“I felt like she was in the best 15% of babies that have diaphragmatic hernia, that she was in the most favorable group,” Cass said.
“When I saw those pictures of her intestine up here and her lungs and heart over here and the fact that she’s fine now it’s absolutely incredible,” said Patrick Bohach, looking at his healthy little daughter.
As soon as Natalie was born a team of top doctors and nurses began to work on her. She was immediately put on a breathing machine and doctors watched her closely to see how strong she was.
“We want the mom to deliver exactly where all of the treatment team is immediately,” said Cass. At four days old Cass felt Natalie was ready for surgery to reposition her organs and repair the hole.
“In her case we were able to just close her muscle together,” Cass explained. In some cases, he says, the hole is too large and must be patched.
Natalie spent three weeks in the neonatal intensive care unit and was able to go home a regular baby.
“We’ll have a moment here and there and be like wow do you believe that happened? Cause you would never tell by looking at her, she’s fine,” said Patrick.
Now Natalie, eats, sleeps and cries like an average five-month-old and doctors believe she will be able to live a regular life and not be limited by the defect.
“I’ll show her one day, this is what happened to you when you were a baby. It’s incredible what they do,” Jen said, speaking of the doctors at the Cleveland Clinic. “They are like heroes to us,” she said.