Zyaire’s CDH Story

Meet Zy.

Looking at him now, you would never know all his struggles. Diagnosed with Left-Sided Congenital Diaphragmatic Hernia at 21 weeks, the hospital in Vermont knew something was wrong at 20 weeks. Still, it did not have the means to properly diagnose, so they sent us to Dartmouth in New Hampshire at 21 weeks, where we learned the news. They shared that they couldn't help us and suggested termination as there was little chance of survival. We declined, and they referred us to the Children's Hospital of Philadelphia (CHOP). After traveling to Pennsylvania on 3 separate occasions for appointments, I had to relocate to Philadelphia at 32 weeks; my partner and all but one of my children stayed in Vermont for school and appointments.

At exactly 36 weeks, our Zy came into the world. My amniotic fluid was too high and put me into early labor. They tried to stop the labor and strengthen his lungs, but his heart rate kept dropping, and I had to be induced. Zy was born on August 31, 2023, weighing 5lbs 9 ounces. He was taken right after birth and spent 2.5 hours being revived and intubated. Zy really struggled and was not able to get his surgery right away, as his body could not handle it. On day 4, he coded, and they removed him from the ventilator and onto an oscillator. The next few weeks were rough. His surgery was canceled three times, and he ended up with two workups for sepsis, as well as treatment for his bilirubin being too high. He finally got his surgery on day 25, on September 25, 2023. Zy was removed from the oscillator 3 days later and placed back on a ventilator. He was intubated for a total of 53 days. On October 13, Zy was removed from the ventilator and placed on CPAP. He spent a total of 95 days in the NICU.

He has had many challenges, including his pic line getting stuck when they tried to remove it, causing a blood clot. He had six weeks of Lovenox injections, twice a day, which did not end up working to get rid of the clot. Additionally, his heart was on the wrong side of his chest; he had a partial shunt in his left ventricle, a duplicate femoral vein in his right leg, and a horseshoe kidney with an extra mass on both sides and double urethras. Zy struggled to feed and came home with an NG tube. Within the first 3 months of being home, we were back in the hospital several times as he developed COVID-19, rhinovirus, and human metapneumovirus at 3 separate times.

Today, Zy is a happy, mostly healthy baby. He is very small for his age, coming in at less than 3% for his weight and head circumference and 17% for his height. He loves to play with his siblings, clap his hands, and climb on everything. He has mastered eating by mouth, crawling, pulling himself up to stand, and walking while holding onto something. He says mama and dada and always has a smile on his face. For everything he has been through, he is the happiest baby we know, and we couldn’t be more blessed and in love.

Sincerely,

Kara & Vern