The discussion thread deepens:
Yes, there is a spectrum. My 16-year-old son, James, has Down’s. We knew that before he was born. We also knew that there was a problem with his esophagus. As it turned out, he was born with no esophagus at all. After several months in the NICU, he was operated on and the surgeons created an esophagus. We have to be very careful about what he eats. Happily, he is devoted to yogurt and hot cereals, which do not get stuck.
He is also very developmentally delayed and has some autistic tendencies. He has a few words but knows how to communicate his needs. He is very social and his receptive language is very good. He is the happiest person I know.
He has two older siblings, now 20 and 23. My wife and I recently talked to them about the decision that we made, including for them, when we decided to have James. They acknowledged that at some point they will be his care givers, at least to some extent. But, when we started to essentially apologize to them, they looked at us like we were crazy. “What are you talking about? He’s our brother.”
It has been hard, but none of us regret the decision we made. The commenters who are looking in at families like ours from the outside should think twice, because they have not experienced firsthand the joys that come with the difficulties.
Another mother of a disabled son shares her story:
Parental care of a medically and developmentally disabled child is sufficiently stressful that it has been found to inflict damage on the parents’ own DNA. This leaves the main caregiver (usually the mother) vulnerable to lethal diseases, shortening her genetically determined lifespan by an average of 13 years.
I am the mother of one such child, now in his thirties, whom my husband and I care for at home. Our son functions at a two-year-old level. He requires frequent surgery (over 20 major operations since his premature birth). He has been diagnosed with autism, cerebral palsy, severe vision loss, hydrocephalus, and retardation. He has had to endure horrible pain throughout his life. Most recently, he has become oxygen dependent again, much as he was following his preterm birth.
I am in my mid-sixties and nearing the end of my “three-year life expectancy” following a cancer diagnosis. Both literally and figuratively, we are asking parents to sacrifice their lives when abortion is banned in afflicted pregnancies or when sick, disabled newborns are medically “rescued” and handed over to their family for life-long care.
Another reader:
My brother, born in 1966, had Down Syndrome and was profoundly disabled, so he was in that 3% to 12% of children with Down’s who are unable to be without assistance. When he was born, his stomach was not attached to his intestines, and his heart had a “hole” in it. My parents were counseled to leave him at the hospital after his birth. They did not, and they chose surgery for his stomach, but not for his heart. When he died at age 17 months, he had never even lifted his head himself. He had not spoken, or crawled. He did not recognize his name, or respond much to others.
I’ve often wondered how I would be different if he had lived; I was raised as an only child. I do know, though, that were he still alive, and as disabled, I would be responsible for his care, as my parents are both deceased. I certainly wouldn’t have been able to care for him at home, and I truly wonder what kind of life he would have had.
After my brother died, my parents didn’t talk much about him – it was too painful, I assume – but my dad did tell me once that a friend of his was so moved that he, the friend, donated a substantial sum to research that led to amniocentesis. So maybe, because of my brother’s life, other parents can have vital information about their own children. Had abortion been an option, I have no idea what my parents would have done, but when I was pregnant, my father was adamant that I be tested. And my perfectly healthy son is named for my brother.
The Dish 