Thanatophoric dwarfism is an always-fatal form of dwarfism that my son Eric was born with. The chest cavity is too narrow to allow normal lung development. I wrote Eric's case up for the Delaware Medical Journal. My paper chronicles our struggle, as parents, to relate to a "child born to die". It also provides the only developmental information on children with TD during their lifetime. When he was born, I asked about his brain and his development while he was alive -- would it be normal, could we relate to him like to any child? Since all of the info about TD children was about pre-natal diagnosis or post-mortem autopsy reports, nobody could tell me. What was I supposed to do, just wait for him to die and not support him, stimulate his development, introduce him to his siblings, in the meantime?
I found an infant developmental specialist to come in and assess Eric weekly. Later she put her findings into a report. I made that report available, through the paper I wrote, so that other TD parents would not have to wonder if their child was a " vegetable" or not.
For the record, Eric developed normally within the parameters of a neonatal intensive care unit.
He responded to touch, to sound, to visual stimuli, could distinguish his parents' voices from that of others. And yes, he lived long enough that I got to see him smile. He had a tough life, but those who knew him thought it a life worth living.
I remember my friend Father Goldstein calling me up after he visited Eric for the first time. His voice was excited. He had been reluctant to go, he said, facing up to an unpleasant duty, ready to see a dying child, an object of pity. Instead, he saw a living baby, going about his life. Eric's nurse turned on his music box and showed Father how he would rock to the music. She showed him how to stroke Eric, how he responded to touch, how his little hand would curl around Father's finger if he placed it in the palm. Fr. Goldstein said he had been surprised that a visit he dreaded turned out to be a meeting with a unique individual, a baby who wasn't sick or dying, just incapacitated.
In 1983, when Eric was born, he was put on a respirator at birth, before the diagnosis of TD had been made. If it had been made, the decision could have been made to either put him on life support or not. Once on the respirator, though, the hospital indicated that turning it off was not an option. If we insisted on it, there would be a whole legal procedure that we might or might not win. We did not want to turn it off, so there was no problem. We wanted to support Eric in whatever life span he could have given a fatal condition.
Now, apparently, a child with Eric's condition can have life support removed against the parents' wishes. How have we gone from the situation where a respirator is considered extraordinary means and therefore not REQUIRED, ethically, to where a respirator is considered extraordinary means and therefore not ALLOWED to a patient?