Hazel’s CDH Story
When I was 32 weeks pregnant, Hazel was diagnosed with Fetal Growth Restriction. Her stomach was measuring less than the 8th percentile, while everything else was hovering around the 30th percentile. At that point, I was told Hazel would be born at 39 weeks. I went in for weekly Non-Stress tests and ultrasounds to monitor Hazel and the placenta. Hazel was breech at that point, and because I also had a very large fibroid, there was no way to turn her safely, so my husband and I prepared for a C-section. Everything seemed to be going okay until my 36-week ultrasound when the doctors found out that the placenta wasn’t working as well as it had been. The date of my C-Section was moved up to 38 weeks, July 5th, 2023. We were expecting a very small baby, roughly 5 lbs, but Hazel was born 6 lbs and 11oz after a routine C-Section. Hazel, however, was struggling to breathe on her own, and it was assumed that she was having a hard time transitioning to life outside the uterus. She went to the NICU, where she was placed on CPAP and had a chest X-ray. Everything appeared normal, and after 2 days in the NICU, Hazel was allowed to come to my room before being sent home. A day and a half after we went home from the hospital, we went to Hazel’s first pediatrician appointment. The doctor immediately noticed that Hazel still didn’t have a normal respiratory rate, had a slight murmur in her heart, and looked jaundiced. She told us to go to CHOP immediately, without stopping to go home. She called the hospital and told them we were on our way.
Once we arrived at CHOP, we were immediately brought back to a room where a team of doctors came in to assess Hazel and administer several tests. She had an echocardiogram, lumbar puncture, bilirubin stick, and infectious disease panel done, to name a few. They found that Hazel had two VSDs. She was also placed on high-flow oxygen. She was admitted to the NICU, where she spent one night under blue light therapy before being transferred to the peds floor and awaiting more testing. Finally, on our fourth day in the hospital, at nine days old, the doctors told us that they believed Hazel had Diaphragmatic Eventration and would require surgery. It took another six days for surgery to be scheduled, and we were told about the three possible diagnoses once they had her open.
1. Diaphragmatic Eventration
2. Diaphragmatic Hernia
3. Liver attached to the Diaphragm, in which case they were not sure if they could do anything to treat it.
It turned out to be that Hazel had both a Diaphragmatic Hernia and that her liver was attached to her diaphragm. They spent the first hour and a half of the surgery just creating a plan (we know this thanks to the wonderful medical student who watched over our girl that day). They were successful in both repairing the hernia with a muscle flap and detaching the liver by removing a small bit of Hazel’s liver. Hazel then spent another 2 weeks in the hospital recovering from surgery. The first week, she was on a ventilator, and then she was transferred to the step-down unit. Hazel struggled to maintain weight, let alone gain weight, but after a week of failed weight gain, she finally gained for two days in a row and was discharged. Hazel was discharged without any medications, respiratory support, or other kinds of wires, just fortified breastmilk. She gained weight quickly and came off the fortified breastmilk at four months old. Hazel turned one this month and she is a very happy, healthy, and active baby.
