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We heard the term Congenital Diaphragmatic Hernia (CDH) for the first time...
My husband and I were expecting our first born child. We had a baby shower and decorated the nursery. My OB insisted on a routine 32 week ultrasound. No one expected to find anything because the 20 week ultrasound was fine, but something was wrong.
There were several possibilities, but it was the first time we heard the term Congenital Diaphragmatic Hernia (CDH). Not knowing for sure, we were sent to a maternal-fetal medicine physician (MFM) in the nearest city for a better ultrasound. They confirmed it was CDH.
After an MRI, we got the devastating news it was a very severe case. His liver, stomach and intestines were in his chest; his lungs were tiny. “Findings suggest a poor prognosis.” “No lung is seen to the left of the midline.” “Large defect, or perhaps absent, left hemidiaphragm.” With little hope in our home town, we evaluated several hospitals and decided on Texas Children’s Pavilion for Women because of their experience with CDH and ECMO capability. We also met another Texas Children’s family who had a CDH survivor near our home town. We moved to Houston at 34 weeks and stayed at the Ronald McDonald House until he was born, awaiting genetic testing results and having more ultrasounds and echo cardiograms. Thankfully, genetic testing was negative, and his heart was strong.
At 39 weeks, Ethan made his entrance. His condition was bad and he was immediately placed on ECMO in the level 4 NICU. Our NICU roller coaster began. Ethan’s repair surgery was done on his second day of life while on EMCO to move his organs to the correct location and to patch his diaphragm. However, there were ECMO complications discovered soon after. He had developed a brain bleed that was expanding, so he had to be removed from ECMO on his third day of life, before he was ready. His lungs did not have enough time to recuperate. We prepared our goodbyes and had him baptized. We sat in the grieving room, crying and praying, expecting the worst news. Neonatologist Dr. Fernandez came in to tell us Ethan was off of ECMO and stable for the moment. Both Dr. Fernandez and Ethan’s surgeon, Dr. Olutoye, were optimistic and uplifting in a time of such despair.
For 11 days, Ethan battled breathing on the high frequency ventilator. We thought we were losing him, as his oxygen was maxed out on 100 percent. The ventilator settings were maxed out. His sats were stuck in the 70s. His pulmonary hypertension was at levels that most doctors had never seen, and he couldn’t go back on ECMO. He was swelling and not responding to diuretics. Ethan never coded, but needed life-saving emergency medications such as bicarb. He was moved to a conventional ventilator, and his condition slowly, slowly improved over the course of several months. After failing to wean off nitric oxide, he started more pulmonary medications which helped him successfully come off of it. After 120 days, Ethan was extubated successfully to high-flow nasal cannula, then low flow, then down to ¼ liter. He was discharged at 177 days! He left with an NG tube, oxygen and five medications.
Ethan was able to come off his oxygen at 13 months old. He now has a G-tube for feeding difficulty. He is only on one medicine (for reflux). He sees occupational therapists for speech and eating therapy. He is now almost 2 years old. He is a happy and lovable little boy who likes to run around the house. We can never thank Texas Children’s enough for saving our boy’s life, and we will never forget the relationships we developed. Also a huge thank you to Ethan’s primary nurses – Daisy Gilaver, Carleen Watts, Whitney Hilton and Christine Doan. These ladies played a tremendous role in Ethan’s healing. Thank you to his brilliant pediatric surgeon, Dr. Olutoye, who could pull a second job as a motivational speaker. We think the world of him and Texas Children’s.