Asaiah’s Story - Congenital Diaphragmatic Hernia

Asaiah was born at 32 weeks, 2 days and has been fighting ever since. I was told about the Congenital Diaphragmatic Hernia diagnosis at Jacobi Hospital during my 20-week anatomy scan. I remember them telling me to terminate because he had a lot of bowel in his chest. The next day, they set an appointment at Morgan Stanley Children's Hospital of New York (CHONY). I went there for an evaluation but unfortunately, they said the same thing. After doing multiple echos and MRIs, we learned that his liver, spleen, bowel, and stomach were in his chest and his heart was shifted to the right. After hearing all of this information, they then referred me to the Children's Hospital of Philadelphia (CHOP) to see if I qualified for the FETO procedure. Due to my cervix being short that day I did not qualify. So I continued my care at CHONY. I had weekly echos and ultrasounds. 

I went to the doctor for my weekly scan at 32 weeks and I learned I had an excessive amount of amniotic fluid in my sac. I was advised to take it easy but prepare for early labor because often times the excess fluid can cause premature labor. At 32 weeks and 2 days, I went into labor and had my son, Asaiah. He was born on April 27, 2022 at 7:42 am. We heard a very weak cry and he was taken to the transitional nursery where he was intubated and put on the oscillator. That entire night and morning, I was told to go down and comfort my son so he can pass in peace but I refused. I kept telling all the doctors that my God is working. Asaiah was on nitric, milrinone, and had 2 doses of surfactant. He was transferred to the conventional vent 2 weeks after birth and was able to come off milrinone and only be on 5 of nitric. Due to his prematurity and being 1.93 kilos, he did not qualify for ECMO and they were afraid to do the surgery so early. After 26 days of life, on May 23rd and being 2.1 kilos, Asaiah was taken for his surgery. He left at 10:45 am and did not return until 6 pm. I didn’t get to see him until around 8 pm that night. On May 25th, they did a head CT and found a small grade 1 germinal matrix hemorrhage. But only 4 days later, on his 1-month birthday, he was extubated, put on CPAP and came completely off nitric. On May 29th, he started feeds at 1 mL. Asaiah is still on a PAP and taking feeds by mouth. He is now 2 months old now and currently taking 80 mL. He is stable on CPAP and we might consider rehab for him in the near future.