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), feeding intolerance, a lot of abdominal discomfort, irritability, and very poor weight gain. By 9 months of age, everybody doubted he would live much longer. Yet, after he turned one, he began to gain weight and became a completely different child. Caleb proved once more how strong he really was.

Season number 2 starts shortly after. We began to worry less about him eventually dying, and Caleb began to live life in the middle of our living room, where most of the action happens. Season 2 had, of course, plenty of health concerns and medical appointments and therapies, but nothing that threatened his life. 

Caleb remained very healthy for a few more years. In fact, after needing to spend a few days in the hospital twice at 1 year of age due to respiratory illnesses, the only other times Caleb needed to be in the hospital were after a couple surgeries. Caleb was, in his pediatrician’s words, “her healthiest fragile patient.” 

Things began to change sometime in 2017. Caleb began to have feeding intolerance again, which got worse over time. Aspiration pneumonia showed up as another unexpected foe. From late September 2017 through the end of the year, Caleb was in and out of the hospital multiple times. It became clear that he was no longer tolerating enough food through his feeding tube to thrive, let alone to survive, so we decided to put him on intravenous nutrition. He is currently fed through a vein 18 hours a day, and he is receiving only a very small amount of food through his feeding tube. The first half of 2018 has been filled with a lot of anxiety over his abdominal discomfort, random high fevers and, as a result, frequent trips to the ER. Urinary tract infections are now part of our problem list. But, thankfully, things are settling down. 

This is, in a nutshell, the new season in which we find ourselves—a season of increased medical interventions and concerns. However, this is also a season of plenty of smiles, giggles, and belly laughs. This is a season of multiple calls for attention in the middle of the night, which start quietly and become louder and louder the longer it takes us to respond. And the beautiful thing is that often times, when I come into his room, my son gets quiet and smiles as if to say, “I got you, mom.”