Caleb's Story in Three Minutes (November 2018)
My second son, Caleb, was diagnosed a few days after birth with full trisomy 13, a chromosomal abnormality characterized by serious health issues and profound developmental delay. At 8 years of age, my son is, developmentally speaking, only a few months old. Even though a couple soft markers had been observed on ultrasound prenatally, I believe his diagnosis came as a surprise to all, including doctors. Caleb was born strong for a trisomy 13 baby. Many die shortly after birth, or require very aggressive interventions to survive. Had he needed to be in the Intensive Care Unit, our story would probably be very different. Eight years ago, “the incompatible with life label” loomed even more menacingly than it does today in our hospital and everywhere else. If I had to divide Caleb’s life in seasons, season number one would be a very difficult first year of life, which included frequent apnea spells for a week starting at 3 weeks of age (for which he spent two days in the hospital),...