My uncle made up a sort of biography of my grandparents lives - interviewed them, put pictures in it and self published it. My uncle has CF, as did their first baby, born in 1948, and died at about 6 weeks old. I thought I would post some of the more interesting things that my grandmother had to say about it....
"That October Chris was born....her birthday was great, but it turned sour pretty soon. She was four days old and had to remain in the hospital, I knew she wouldn't nurse very well and they'd come in and kind of poke her cheek to get he to suck and she wouldn't do it. I had no idea something might be wrong with her; I had no idea about children....at four days old she projected vomit violently across the room - green - and that scared me and I called the nurse. They came and took her right away and I knew something was wrong. But I didn't know what.
"I went home the next day without the baby....and I never saw her again after that day, which really hurt me afterwards. But I knew I couldn't go without picking her up and all this, which they didn't let you do. Anyway, she was in the hospital for five weeks. She was in the hospital and she got bad right away, really. Dad saw her and our doctor suggested that I didn't come up to see her.
"Dad used to go up and see Chris at the hopsital but he never fed her, isn't that strange? He never said much about all that, but it must have bothered him a lot. Here he'd lost his mother and now his first baby was very ill.
"Chris started coughing so the nurses didn't want to feed her either, so our doctor would sometimes leave his office and go down and feed her. Now that's a wonderful doctor. He called in a pediatrician and a surgeon and they thought she has some intenstinal problem and they would operate and send her home. My docotr didn't agree with their diagnosis. He said he went to the hospital library every night and studied and studied and studied and tried to find out what she had and he said, 'I think fibrocystic disease is what she has.'
"Our doctor was a man named Dr. Guinta...he was a marvelous doctor...he todl the doctors that if this - fibrocystic disease - is what he thinks it was, Chris won't come home again, and he didn't think it would be fair for the doctors to allow me to think I would bring her home any day . He told these other doctors that he was going to tell us the truth, and that is what he did.
"Chris turned real dark, and Dad just didn't want me to see her like that. Then that was just it. She couldn't eat. She couldn't do anything and she died on thanksgiving day."
"The doctor eventually diagnosed that Chris had cystic fibrosis. He said it is fibrocystic disease of the pancreas and would've never been normal. He said he thought everything worked out for the best. My one regret was that I never got a picture because in those times they never took pictures...Dr. Guinta told Dad and I, 'Go ahead and have your family. There's only about 16 cases of this in the world of this and there's no problem. Have your family.' So we did. then they came back years later and said it's two out of four when they really decided what it was..."
My uncle is now 54 years old. He had a tx about 8 years ago and is doing well.
So interesting to see what a differentce 60 years makes.
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