tag:blogger.com,1999:blog-4278015561752016263.post5686773428976696507..comments2023-06-01T06:08:26.602-04:00Comments on Water on the Brain - and Lots on My Mind: Selecting Kids with Spina Bifida and Hydrocephalus for Death - Oklahoma, 1977-1982Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-4278015561752016263.post-59646473293128472782016-07-15T16:07:51.209-04:002016-07-15T16:07:51.209-04:00I came a cross this story, when I was trying to lo...I came a cross this story, when I was trying to look up my mom. My mom was Frieda Smith (the one mentioned in this article) I remember her coming home and telling my sister and I that Stoney was sick and the doctor told her that it would be best on the family if Stoney didn't come home but to place him in a medical facility that could care for him. She said that the doctors said that he (Stoney) would not live and that the Bethany Childrens shelter was where he could get the care that he needed. Stoney passed away less than 3 months after he was born at the Bethany Childrens shelter. Years had passed and my parents were watching the news and a story came on about the experiment. My mom started yelling at the TV. They ( the doctors at Childrens) never told us that Stoney could possibly have been saved. They always told my parents that "if" Stoney lived that his quality of life would not be very good...he would never walk, talk, or even be able to recognize anyone. The doctors told my parents that it would just be prolonging the inevitable. My parents not knowing any better, followed the doctors recommendations. Allennoreply@blogger.comtag:blogger.com,1999:blog-4278015561752016263.post-9669630257329967322015-03-11T16:40:11.488-04:002015-03-11T16:40:11.488-04:00I am 53 now and have spina bifida and hydrocephalu...I am 53 now and have spina bifida and hydrocephalus. I remember Richard (R.H.) Gross at Childrens in Oklahoma City and the controversy this caused. He wanted to operate on me but my mother wouldnt let him.Jeffnoreply@blogger.comtag:blogger.com,1999:blog-4278015561752016263.post-76481224494912488482011-07-04T14:07:52.122-04:002011-07-04T14:07:52.122-04:00I am sitting here looking up something on my 5year...I am sitting here looking up something on my 5year old daughter who has Spina bifida and hydrocephalus and I am sick to my stomach on what I have come across...she was born in 2006 and I will always remember our first meeting with the neurosurgeon.. Even at 8 months pregnant he said to me.. They don't send me you guys at 16 weeks because I would tell u to abort your child..I have never cried so hard after that meeting my husband had to come get me out of the bathroom..and then we received a huge bill for that... Disgraceful...she is the most amazing person ever..the rest of the world needs to shut up and let people make there own decisions about life...Jennifernoreply@blogger.comtag:blogger.com,1999:blog-4278015561752016263.post-39094587982967389812010-07-28T03:30:34.008-04:002010-07-28T03:30:34.008-04:00It's crazy how I found this article. I was doi...It's crazy how I found this article. I was doing a search for an electric organ I had as a child and this came up.<br />What's really crazy is that my Grandmother used to work for the Children's Hospital in Oklahoma City back then.<br />We have pictures of her working in the nursery and even have a picture of her holding a baby who had Hydrocephalus.<br />My Grandmother passed away over 10 years ago but I wonder if she knew that was going on? Something tells me she would not have stayed working there if she had.<br />Wow...It's a small, sad, sad world.<br /><br />Thanks for the article.....Brandy.astrozombiegirlhttps://www.blogger.com/profile/15407716073785300372noreply@blogger.comtag:blogger.com,1999:blog-4278015561752016263.post-69625875538345082642010-03-14T20:40:28.312-04:002010-03-14T20:40:28.312-04:00Yikes...this is the kind of stuff that's alway...Yikes...this is the kind of stuff that's always made me cringe whenever I've come across it in the medical ethics/disability issues/etc. literature over the years. In the back of my head (no pun intended), all I can remember are the various family members and handful of docs who told quite a story about the controversy I caused by being a preemie with hydrocephalus. The stuff left me truly speechless, and that is quite a serious feat! I always said that I was grateful for the one "rebel" who decided I was worth taking a chance on when the rest of them didn't want to even consider operating...even if there are still too many moments (even 37 years later) when I curse the after-effects and excessive curiosity of doctors and other medical types. (I could tell a really weird story about the latter, but I won't!)thecatsmeowhttps://www.blogger.com/profile/16269681849332498912noreply@blogger.comtag:blogger.com,1999:blog-4278015561752016263.post-13709482132433718322010-03-11T13:18:04.317-05:002010-03-11T13:18:04.317-05:00I miss the Rag; got it on audiocassette, had lette...I miss the Rag; got it on audiocassette, had letters to editor published in mid80s, when I had ME/CFS (not yet diagnosed) on top of allergic asthma.<br /><br />I will need reread(s)due ME cognitive, but my first reactions: I cried, please add "Jews" to "European" Holocaust, and this story was about the 1970s/80s, not long ago in the distant past. Then I get angry. So thanks for the article.<br /><br />Found this new posting while checking my typing of the url for someone on a website. No apologies required re time between postings. I understand. Could be me if I get to being able to do a posting #1, chuckle. Thanks. It's a good site.sandahttps://www.blogger.com/profile/10642530217237674688noreply@blogger.com