Congenital diaphragmatic hernia (CDH): Drew's fight

Patient Stories

We sat in the low-lit room, both marveling and relieved to see our son’s little heartbeat. It was March 5, 2014, a date that changed our lives forever. As first time expecting parents, we were excited to go to our 19-week anatomy scan.

Our excitement turned to worry when the sonographer stopped talking. We knew something wasn’t right when she kept leaving the room and returning with different people to look at our son’s images. Terrified to hear the answer, but desperate to know, I finally said the words I had to, “Is everything OK?”

It wasn’t.

We would learn that our son, Drew, had congenital diaphragmatic hernia (CDH), a condition where the diaphragm doesn’t properly form, allowing the abdominal organs to migrate into the chest cavity often compressing the heart and preventing lung growth. As we were rushed to see a maternal-fetal medicine (MFM) doctor that Tuesday, we did what anyone would do – started Googling. One-in-2,500 babies are born with CDH. Half of them don’t survive.

Unfortunately for our family, Drew’s CDH diagnosis was only the beginning of our heartbreaking news. Before the blows kept coming, however, we found hope at Texas Children’s Hospital.

The MFM doctor we saw that day knew of a fetal intervention for CDH babies. We were willing to go to the end of the earth to give our son the best chance of survival. As fate would have it, we would only go four hours west of our home in Baton Rouge, La. By that evening, we had scheduled a comprehensive evaluation at Texas Children’s Fetal Center ® to see if we would qualify for Fetal Endotracheal Occlusion (FETO)—a surgery performed in utero that would aid in Drew’s lung growth, giving him a better chance of survival once he was born.

As the shock of the CDH diagnosis wore off and with renewed fighting spirit, we headed to Houston, only to be brought to our knees again. During our evaluation we would learn that Drew not only had severe CDH, but also congenital heart disease. We would not qualify for FETO and doctors could not promise us they would recommend any intervention. Only then did a deeper round of genetic testing reveal the genesis of Drew’s issues, 8p23.1 Deletion Syndrome. He was missing a piece of his eighth chromosome which manifest itself in many physical malformations.

Every family who has a story similar to ours also has earth angels that give them hope. For us, that is Dr. Oluyinka Olutoye. During those first dark days after our initial diagnosis, we found a video online produced by Texas Children’s entitled “Most Precious,” where Dr. O is one of the surgeons explaining the work at the Fetal Center. One line struck us then and still resonates with us today, three years later, “My prayer every day is to be an answer to someone’s prayers,” he said.

We transferred care to Texas Children’s six weeks before Drew was born. Dr. O first operated on Drew when he was 18 hours old. Drew would have three surgeries in his first 5 days of life. Our neonatal intensive care unit (NICU) journey would last seven months and would be filled with peaks and valleys. The lowest would be two heart surgeries in 11 days—we are forever grateful to our surgeon for saving our son with the risky second surgery. The highest was taking Drew home on Feb. 16, 2015, after 213 days in the NICU and CVICU.

Our family proudly considers ourselves unofficial ambassadors for Texas Children’s, encouraging families faced with devastating news involving their children to seek hope at a place where we found it in our darkest moments. It was there we found lifelong friends like Dr. O and Drew’s primary care nurses Nikashia Franklin, Lolita Fernandez and Jamie McKissick–a group we fondly refer to as “Drew’s Texas Children’s Angels,” – along with others who are too many to name here.

As we celebrated Drew’s third birthday, he has had eight surgeries. He receives a daily regimen of medicines, some of which he will likely be on his entire life. Drew has a G-tube but is starting to eat some food orally and is getting closer to walking. Despite severe developmental delays, Drew continues progressing thanks to a wonderful team of therapists in Baton Rouge that see him six times per week.

Our challenges remain, but we have a daily reminder that our prayers were answered and that being Drew’s parents is the most precious gift God could have ever given us.

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