Folks can presume that these children have no feelings, aren't "people", or have no soul.
He only lived for 6 months, but he did respond. When the nurses came near him, his heart rate accelerated. When Mom or Grandma came near him, his heart rate normalized and his limbs relaxed. He anticipated the pain of the tests to come; anticipation denotes awareness.
He most definitely had feelings, and when you held him, you could sense the little soul inside of him. He would turn towards you, grab for your shirt or finger, and snuggle in when you kissed him. Imprisoned in a body that would not sustain him, but he was definitely there.
Before he was born, I would have agreed with some other posters that children like this are just vegetables. I saw the absolute best in my sister-in-law during that time, the strength of her love, and my nephew's daily battle to LIVE. It changed my heart completely, and I am now firmly pro-life.
My condolences to you and your family.
In cases where someone has major brain damage, sometimes other parts make up for the difference. The brain stem is controlling his life functions, so it does make you wonder if some of the other functions we think he may not have may be compensated with the areas he does have? How much is wired into genetics (functional compensation rules?) to redirect functions?
(I don’t know, just wondering).