I've lived with a child like this- my brother. Trust me when I tell you there is no possibility of advancement, improvement, development or whatever you want to call it. Children with severe brain damage are not even infant-like- they do not have the potential for achievement that an infant has.
My brother was severely brain-damaged due to hypoxia before birth. My parents lived in hope for many many months, hoping that their son would regain function, that he would be able to do more than eat, eliminate and sleep. It never happened, it could never happen- the damage was too severe.
As time went on he LOST function, not through lack of care or trying. By the age of two he had even lost the ability to suckle and spent the last two years of his life being tube-fed. He never cooed, never smiled, never recognized his mother's face (or any family member for that matter).
Here's a blog post I made about my brother and his short life. If you lived what I have lived you would understand why these parents did what they did for their daughter. It's a terrible thing, to have a child like that.
I always get a little frisson of guilt when I tell people Im an only child, because Im not, really.
I was not quite 2 when Georgie was born, so I really dont remember anything from around that time. All I know is the little my mom has told me, in bits and pieces through the years. I hoard these little bits of information like a miser, storing them in a Georgie-shaped hole in my heart. I never know when the next one is coming.
I know my mom had a difficult pregnancy, a lot of spotting and bleeding and cramping the whole time. She also had terrible morning sickness that lasted all day, and also the whole pregnancy; she left the hospital after his birth weighing less than she did before she got pregnant- I seem to remember her saying she only gained about 6 pounds.
I know there were complications during labor and delivery- that Georgie was in fetal distress, that there was meconium in the amniotic fluid. I know that the doctors estimated later that he was without oxygen for between 3 and 4 minutes during delivery. I dont know what caused it- my mom has never said, and its not something that I could ask. The doctors knew, but they didnt say anything to my parents, hoping I guess that Georgie would be fine. My parents thought they had a healthy baby boy, named George Junior. Until.
Until my dad had gone home, and my mom was alone in her hospital room with Georgie, just hours after his birth. She was holding him on her shoulder, burping him after a bottle. His body went stiff, and then began to shake. She had no idea what was wrong. She was afraid to move, afraid to put him down, afraid. So she rang for a nurse. It was fifteen minutes before a nurse came. I cannot even begin to imagine what those fifteen minutes must have been like for my mom. The terror, the fear that her son would die in her arms and that she couldnt help him. Even today, 34 years later, she cannot bear to watch anyone hold an infant that way.
The nurse finally came and grabbed Georgie out of my moms arms and rushed him away. Someone else, a nurse or a doctor, called my dad and told him to come back right away. My mom was told nothing before my dad got there- where her child was, what was wrong with him, even if he was alive. When my dad finally got there he and my mom were told the basics- fetal distress, meconium, oxygen deprivation. Seizures, serious brain damage, intensive care. Touch and go, prepare for the worst, emergency baptism. Probably wont live for more than 6 months.
I dont remember when Georgie finally came home. I do know that my parents looked long and hard for an answer, a solution. They hoped that the doctors and experts were wrong, that Georgie would devlop normally, that some miracle would happen and he would wake up one morning and smile.
So Georgie came home, and my parents did the best they could, at a time when there were not many social services available, and those that were, were only available to those below the poverty level or for those families that chose to permanently hospitalize their children. Every agency that they applied to turned them down- I remember my mom telling me once that my dad made $100 a year too much for Georgie to be eligible for assistance from Easter Seals- she wont donate to them, even to this day. The Masonic Home for Children recommended that they put Georgie on their wait-list, just in case something happened to one of my parents and the other could not carry on alone. So there was no special stroller or wheelchair, no physical therapy, no respite care, no special education starting at 6 months old. About the only thing they got help with was the electric bill in the summertime- they got a reduction because the room air-conditioner was deemed medically necessary.
When Georgie was six months old, my parents apartment lease wasnt renewed, and they had less than a month to find a place for the four of us to live. Their landlady didnt renew their lease because her daughter was pregnant, and she thought what Georgie had was catching, that her daughter shouldnt be exposed to a retarded baby while she was pregnant. To avoid that sort of discrimination my parents bought a house, a modest row house that they could barely afford. It had three bedrooms though, so Georgie could have his own room. Except that Georgie didnt like his room- he would moan all night, so loud that no one could sleep- I barely remember this, it wasnt the cry of an unhappy baby but an unearthly moan, like a trapped animal. He didnt like my room or my parents room either. The only place where they could put Georgies crib where he wouldnt moan was the dining room. Since we had no dining room furniture, the dining room became Georgies bedroom. But Georgie needed someone with him at night, to feed him and to suction his airways. So my parents bought a sleeper sofa and my dad would sleep in the living room to be close to Georgie- he took the night shift since my mom was with him all day.
We rarely went anywhere- Georgie quickly grew too large for carriages and couldnt sit up unassisted in a stroller, so my mom or dad had to carry him. There were no vacations- no money for them, and who would care for Georgie? The world was not ADA-accessible in the early seventies. Once Georgie outgrew an infant car seat transporting him was difficult- there were no car seats for older kids, he had to lay on the back seat with someone next to him to keep him from rolling. Or for short trips he could sit on someones lap. Once he was over a year old I dont remember Georgie going many places, except to the doctors or the hospital. I dont remember the stares, but Im sure they were there. My mothers parents were over quite a bit to help out, to give my parents a break (and in retrospect to give me a bit of attention). Once in a while they would take me and my mom on a day trip to the shore, or to a local amusement park. I have no memories of my father on any of these trips- someone had to stay home with Georgie.
For a couple of years, Georgie was bottle-fed. He continued to have seizures though, and eventually he lost the suckling reflex and had to be tube-fed. I still remember the cans of powder for Georgies tube feedings stacked under the kitchen sink. The stuff was called Meritene, and it came in cans with yellow plastic lids and dark blue labels. It had to be mixed with water to a thick slurry, and it was my job to watch, once my mom had inserted the tube in Georgies nose, down his throat and into his stomach, to make sure there were no lumps stuck. I took my job very seriously; I would drag the kitchen step-stool into the dining room and next to his crib so I could sit on the stool and see the whole length of the tube, from the bag down to Georgies nose.
Georgie was in and out of the hospital quite a bit with pneumonia. I remember going to pick him up from one stay, all happy and excited that my brother was coming home. Looking back, it was his last hospital stay- the doctors must have told my parents there was no hope, to take him home and make him comfortable.
It was early on a Sunday morning, bright and cold. Santa would be coming soon- we had just had a visit from him in my first grade classroom, and I had brought home my candy cane to put in Georgies stocking- I knew he couldnt eat it but it made me feel good to give it to him anyway. I always used to go to Georgies crib first thing after coming downstairs, to say good morning, then my mom would hook up the bag and the tube and I would help feed my brother. But this morning his crib was empty. I thought he had gone back to the hospital. But my parents took me into their bed, both of them together, with me between them, and told me that Georgie had gone to heaven the night before. That he had been sick, but the doctors couldnt make him better, so God decided to take him to heaven so he wouldnt be sick anymore. And God would fix him so he could walk and talk and play and run and be a normal little boy forever in heaven. I remember crying a little, sad for me but happy for Georgie up in heaven. I was more surprised by the fact that it was Sunday and we werent going to mass than I was that my brother had died.
I remember his funeral, me and my mom walking right behind his little casket being carried by my dad and my uncles. I remember seeing my whole first grade class in the church. I remember sitting in the front pew, squished between my mom and dad- they held my hands so tight. I remember the priest who said his mass- he was one of my favorites, an Indian priest who often came into the first grade classrooms to talk about God. I remember walking out of the church behind the casket, saying to my mom, Thats not really Georgie in there, hes up in heaven with God, right? I remember Christmas, the last Christmas I believed in Santa. Santa never brought Georgie that much, a few Matchbox cars in his stocking, some new clothes under the tree, a stuffed toy for his crib. I always ended up playing with the few toys he got. My parents must have done the Christmas shopping early that year and not known what to do with Georgies presents, so they put them out anyway. I remember sitting by the tree in the dining room, the tree that was in the same spot where Georgies crib had been just a few days earlier, and telling my parents, Santa must not know Georgies dead!
I hate that I have so few memories of my brother. Most of my memories of him are of his death and funeral. To me his life was normal, unremarkable, and therefore unremembered. Only his death and funeral were different and unique and made an impression on my mind. I have a few scattered memories- Georgie in his crib, lying there with blank eyes. Georgie lying in his crib, a tube in his nose, while I watched the tube for clumps and listened to the noises in the kitchen- my mom doing the dishes after dinner, she and my dad talking, the sounds of home. Me, sitting in the back seat of the car, in front of the hospital, waiting for my mom to come out with Georgie. The Fisher-Price radio that hung on his crib rail and played Twinkle Twinkle Little Star- I kept that for the longest time, hidden in my room. Every now and then I would take it out and wind it up. Once in a while when I had trouble sleeping I would wind it up and stick it under my pillow. My mom found it in my room when I was about 11 or 12 and took it away from me. She still has it. The sleepy bunny that my grandparents gave him his first Easter-there is a picture of all the grandchildren, Georgie included, on the sofa in my grandparents house, holding the stuffed toys that we got as Easter presents that year. That was when Georgie could still go places, when my parents still had hope that the doctors were wrong, that their son would be fine. I had the bunny for a while too, until my mom took it away- I dont know if she still has it. I can recreate some scenes from pictures in my familys photo albums, but they are not true memories.
I miss my brother. I dont think a day has passed in my life where I havent thought of him at least once. There is a hole in my heart and in my life since the day he died and I started lying about being an only child. Telling the truth just raises too many questions that even as an adult I cannot handle. So I lie, say things like, "Yes, I was spoiled," or "No, I never had to share, I got everything I wanted, except that pony."
I want my brother back, you son of a *****.
phillybeth what a tribute to your brother and how much he was loved.
Nothing ever did. 
Really just a few seconds more and my brother would have been stillborn; a few seconds less and he probably would have been 'normal'.
