Mila’s Story: Congenital Diaphragmatic Hernia (CDH) and FETO Procedure
From Diagnosis to Delivery – and Beyond
World-renowned care for rare fetal abnormalities at the Cincinnati Children's Fetal Care Center is what brought Maddie Zito to us for prenatal care for her unborn baby Mila.“When I found out Mila had congenital diaphragmatic hernia (CDH) during a routine anatomy scan, everything changed,” said Maddie. “We decided to come to Cincinnati for care almost immediately.”
CDH occurs when there is a hole in the baby’s diaphragm (the muscle that separates the chest from the abdomen). When this happens, contents from the abdomen migrate into the chest, which crowds the lungs and prevents them from developing normally.
Dr. Foong-Yen Lim, surgical director at the Fetal Care Center, understands why families come to Cincinnati for care.
“We have a long-standing team that is dedicated to taking care of babies with CDH. This is different from a lot of other hospitals, where you’re getting care from whomever is the doctor on-call that day,” said Dr. Lim.
An Innovative Answer
When Maddie returned to the Fetal Care Center for her 30-week prenatal check-up, a routine ultrasound revealed that Mila’s CDH had become severe, and met criteria as a candidate for fetoscopic endoluminal tracheal occlusion (FETO), a breakthrough procedure currently under investigation as research protocol, that may help improve lung growth before birth.“Mila’s odds of survival without the procedure were not good,” said Maddie. “We wanted to try everything we could.”
The Fetal Care Center is one of the few places in the nation to offer this minimally invasive procedure that involves inserting a tiny balloon into the fetus’ trachea. Performed by one of the most skilled and experienced teams of physicians in the world, this was Mila’s chance at survival.
“In severe cases of CDH, the survival rate is ranging from less than 20% to 50%, but with FETO, we’re seeing a huge improvement in odds of survival,” said Dr. Lim. “Right now, it looks like survival rates as high as 90% are possible, but we’re still learning.”
Maddie and Mila underwent the FETO procedure after extensive evaluation and counseling, and the entire family stayed in Cincinnati until Mila was born.
A Two-Part Solution
“The FETO procedure has two parts, so it’s important for mothers to stay near us between the procedures,” said Dr. Lim.First, a balloon is placed in the unborn baby’s trachea or windpipe. The balloon blocks the trachea and remains in place for a few weeks. This allows fluid produced by the lungs to build up below the balloon and that may help the lungs to grow.
After several weeks, the balloon is removed in order for the lungs to mature and to allow the baby to breath after birth.
This is just how the process worked for Maddie and Mila. Once the balloon was inserted, Maddie stayed near the hospital for weekly ultrasounds and to monitor Mila’s heart rate and well-being. One of the fetal nurses called every day to check in.
“They did a phenomenal job of preparing us for what was coming and calling constantly to check in and make sure we were comfortable with everything,” said Maddie.
