The OBGYN was concerned at 28 weeks when mom was pregnant with Carter.
Carter was small for his gestational age in the womb. Carter was born at 34 weeks 5 days via emergency c-section and was whisked away to the NICU. The doctors and nurses tested the placenta to see why it was underdeveloped and tested Carter for any infections.
At two days old, the nurses were feeding him a bottle and he had a seizure in the NICU. The nurses and doctors scheduled a swallow study to see if he was aspirating, and sure enough, he was. Carter was a month old, and the nurses and doctors came into the room and told me that he needed a G-tube to help him with nutrients and hydration.
It was the hardest decision I have ever made for Carter.
A year later, the neurologist decided to do a genetic sequencing test.
Three weeks later, Carter’s results came in, and it was confirmed that he has Cornelia de Lange Syndrome – gene mutation SMC1A.
Advice to other parents – rely on friends and family for support.
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