Lucinda’s Story: Overcoming a Mild Congenital Diaphragmatic Hernia

At her 20-week ultrasound appointment, Katie was not prepared to receive the devastating news that something was wrong with her baby. The doctors suspected a congenital diaphragmatic hernia—a birth defect that occurs when the diaphragm does not close properly during development and the opening that is left allows for the abdomen’s contents, most commonly the stomach and intestines, to move into the chest of the fetus. Katie was told her baby only had a 60% chance of surviving.

She was immediately referred to the Chicago Institute for Fetal Health for further testing and information on the diagnosis. Within a week she was at the Institute for her appointment. The day consisted of a fetal MRI, an ultrasound, a fetal echocardiogram, and a team meeting with a variety of specialists to better determine what was going on with the baby and the severity of the diagnosis.

“The team is so awesome,” said Katie. “It was wonderful having all the testing done at once and the way they laid everything out, every single specialist was there to discuss the results and walk us through what this was going to look like for our family and daughter before, during and after she was born.”

Dr. Shaaban and the team were able to confirm the CDH diagnosis and determine that it was mild in severity. They showed Katie and her husband, Phil, real-time images of what their daughters lungs looked like and explained what this meant in terms of their baby’s development and how it would affect the delivery and treatment after birth.

For the first time, Katie and Phil felt like they could breathe because they knew, that despite the long journey that lied ahead, their daughter was going to be okay. On August 3rd, Lucinda was born, and the doctors deemed her well enough to let her lie on Katies chest before she was taken to the NICU.

Lucinda was a fighter and by day 3 was able to go to surgery to have the hole in her diaphragm closed. The surgery was a success. By day 8 she was able to come off the ventilator and by day 15 she was off all oxygen all together!

“The hardest thing to do was leave her side but the team made it easier. The nurses and doctors were so supportive and encouraging, which made it all manageable.”

After 6 weeks in the NICU, Lucinda was able to go home. They have had follow-up appointments with Dr. Shaaban, the Neonatal team and speech therapy to help with feeding. Today, Lucinda is growing and is such a happy baby. She wakes up every morning with a big smile and she loves to talk to her mom, dad, and older brother, Gabe. Katie and her family feel very fortunate to have a healthy baby and so much support behind them.

“I would recommend the Chicago Institute for Fetal Health to anyone. The fact that you have this huge group of specialists, focused on you and your baby, providing you with all the information you can get is amazing. This is where you need to be.”

Katie’s advice to families dealing with a similar diagnosis is, “even though this is such a tough diagnosis, if you have the type of support that the team at the Chicago Institute for Fetal Health provides, you will be able to get through it. You can leave your worries behind, with their team at your side.”

The Chicago Institute for Fetal Health

With more than 40 years’ experience, The Chicago Institute for Fetal Health is a regional leader in the research and care of pregnant women with fetal complications. As one of only a few comprehensive fetal centers in the country, the institute is able to offer pre-birth counseling and care, as well as corrective fetal intervention if needed. 

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