Carson is Writing His Own Story after Being Diagnosed with a Congenital Diaphragmatic Hernia

February 08, 2019

At Katrina’s 20 week ultrasound, doctors noticed something alarming: it appeared as if there was a mass on the baby’s lungs. Since they could not explain this finding further, her doctors told her to consider transferring to Lurie Children’s because of their expertise and access to The Chicago Institute for Fetal Health. “Not knowing what was going on before transferring was scary, but I pushed any fears in the back of my mind,” said Katrina. 

Once Katrina and her husband, Andrew, arrived at The Chicago Institute for Fetal Health, they were given an itinerary of what to expect for the day: another ultrasound, fetal MRI, and fetal echocardiogram to better determine what was going on with the baby. After testing, they met with Dr. Aimen Shaaban, Director of The Chicago Institute for Fetal Health, and his team of experts to discuss the diagnosis. Their baby had a congenital diaphragmatic hernia (CDH). 

A CDH is a birth defect that occurs when the diaphragm – the muscle that separates the chest cavity from the abdomen – does not close properly during development. 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. In their case, the baby’s intestines and stomach had relocated to the chest. “‘How will this affect our child in the long run?’ was the first thing we thought of after hearing this news,” said Katrina. “Dr. Shaaban had the answers to all of our questions. He walked us through the plan while being very patient with us.” 

Katrina was induced at 39 weeks with a difficult delivery ahead. She was in labor for three days until she finally gave birth to her baby boy, Carson. Immediately following his birth, Carson had to be rushed to the neonatal intensive care unit (NICU) to stabilize his breathing and monitor his heart. “If I didn’t know they were going to take him to the NICU right away, I would have been a hot mess. It was nice to be prepared for that moment,” said Katrina. 

Next Step: Surgery 

Just two short days after being born, Carson was ready to undergo surgery. Dr. Shaaban performed the thoracoscopic operation using a telescope and tiny instruments through three small incisions along the side of the baby’s chest. He guided the herniated organs back into place, so Carson’s lungs would have room to grow. Lastly, Dr. Shaaban sewed the hole in the diaphragm shut. “Carson did so well recovering despite a little fluid build-up in his chest, which is common after an operation like this,” said Katrina. “I knew Dr. Shaaban was going to take care of him.” 

Going Home 

Carson was breathing on his own in no time, allowing Katrina to finally start breastfeeding her baby. The family spent five weeks and one day in the NICU with their newborn until they were able to take him home. “We were so happy and lucky because the time we spent in the hospital was much shorter than expected,” said Katrina. “We wondered if he was going to be okay when he came home and everything would be in our hands, but we knew they wouldn’t release him if he wouldn’t be fine.” 

Now, Carson is 13 weeks old and thriving. “He is a normal baby who loves to socialize by making cooing noises,” said Katrina. “Our last scheduled check-up with Dr. Shaaban will be when Carson turns six months old. We feel like Dr. Shaaban is a part of our family now. He’s so personable and always remembers the smallest details.” 

“One of the things that stuck with me is when Dr. Shaaban told us every baby with a CDH has a different story, so we should not base our expectations on other stories. Our baby will write his own,” said Katrina. “Maintaining a positive outlook and remembering it could always be worse made me realize what we have is a blessing. Lurie Children’s and The Chicago Institute for Fetal Health will always and forever be in our hearts because of how we were treated there and how they cared for us. 

Learn more about The Chicago Institute for Fetal Health