“He is a happy, mellow boy who loves being surrounded by his family. And we absolutely love him and delight in him.”
Caleb Morley, Trisomy 13, March 25, 2010, St. Louis Park, MN
My son Caleb is my second child, and we call him our “surprise baby.” We did not know we were pregnant with him nor did we know he would be born with such a severe condition.
During my 20-week ultrasound a couple soft markers were identified, which combined with my age, made the perinatologist concerned for a chromosomal abnormality. However, we declined having an amniocentesis. A second ultrasound a month later, gave another perinatologist reassurance that most likely everything was fine.
Caleb was born at 37 weeks gestation. The first sign of trouble was the fact that he did not breathe right away and needed some blow-by oxygen. When he recovered, he was given to us, but both my husband and I could tell there was something different about him. For one, he did not show any interest in breastfeeding and he seemed extremely mellow for a newborn.
The nurse noticed he was getting dusky at times, so he was quickly taken from us. A little later, she came in to inform us he was being transferred to the Special Care Nursery because of his oxygen desaturations and a borderline glucose level.
Everything happened quickly, and I no longer recall events in proper chronological order, but I do remember a nurse practitioner from the NICU coming to check on him and asking us if we wanted her to tell us everything different she noticed about our baby. We said “yes,” and she started… his ears, his nose, his hands, his tone…
Two days later we received a diagnosis of full trisomy 13.
Caleb spent six days in the Special Care Nursery learning to feed. Fortunately, he was not born with any major organ problems, so doctors did not consider him in imminent danger.
He came home and did well for three weeks when he suddenly began having apnea spells, apparently triggered by esophageal reflux and his inability to coordinate swallowing and breathing. For a whole week, the spells would repeat and we thought we would lose him. That was the most terrifying and sad week of our lives. That was, also, the end of oral feedings. Since then, my son has been tube-fed.
He struggled to gain weight his first year of life and was severely malnourished. He had a lot of gastrointestinal discomfort, and even though he was born with a healthy weight, it took him an entire year to reach 10 pounds. Thank God, he turned the corner and began to gain weight, and the discomforts subsided greatly.
Caleb has a long list of medical issues (kidney reflux and displasia, malrotation, cortical blindness, hypothyroidism, poor muscle tone, seizures, to name some of them), but overall has been a remarkably healthy child. He is very delayed developmentally, but has not required frequent hospitalizations, so we consider ourselves very blessed.
He is a happy, mellow boy who loves being surrounded by his family. And we absolutely love him and delight in him.