View Full Version : Brittle bone disease and pregnancy
10-19-2011, 08:09 PM
Ok, I will try to be sensitive in this question and I don't mean to offend anyone in any way.
Some years ago I met a woman on a forum who claimed to have brittle bone disease (Osteogenesis imperfecta). She must have had a severe form because she is under three feet tall, confined to a wheel chair and spoke of suffering pain from old injuries, broken bones etc as well as nasty lung infections that have sometimes been life threatening.
This woman is married and her husband does not have the disease. He is, in fact, her primary care giver though her mother sometimes steps in.
The woman also has a teenaged child. He also has brittle bone disease and is confined to a wheelchair. Very sad.
However, apart from the rather embarrassing and intriguing idea of someone with fragile bones enjoying a full sexual life - I am trying to be sensitive and she was quite open about her abilities in the sack - I find it hard to believe that she was able to get pregnant in the first place, but then be allowed to carry the infant through her pregnancy. Surely a doctor would advise against this and I can imagine it could be very dangerous to her health and the infant's.
From what I have read about this horrible condition and especially for those who are so badly affected that their growth is stunted, it would seem that what she claims is just about impossible - I mean the full sex life and the pregnancy/child. I find it equally as difficult to imagine why anyone would lie about such a thing though. Opinions?
10-19-2011, 08:39 PM
I can't answer your post. Sorry! I just wanted to add that some years ago, during the partial-birth abortion debate, I read a letter to the editor in Newsweek written by a woman who claimed her daughter had been pregnant with a fetus with this disease, perhaps a more extreme form of it. The fetus wasn't diagnosed until the third trimester. (I do not know if it was a male or female fetus, so must resort to "it" and hope nobody is offended.) By that time, it already had many broken bones just from kicking and moving in an increasingly confined space. The letter writer said her daughter elected to have an abortion rather than allow the fetus to experience more prolonged pain. Doctors said the baby would not have survived the birth process.
A letter to the editor is anecdotal at best, but maybe it adds further depth to the OP.
10-19-2011, 09:26 PM
...but then be allowed to carry the infant through her pregnancy. Surely a doctor would advise against this and I can imagine it could be very dangerous to her health and the infant's.Who would not 'allow' her? Her husband? Presumably he wanted a baby too. Her doctor? A doctor will advise of risks, but leaves the decisions to the patient.
It may be riskier than most of us are comfortable with, but someone with this disease is already used to risks outside our comfort zones.
Furthermore, there is a chance the baby will not have the disease. If the baby does, there are modern treatments that can mitigate the disease. What parent with this disease wouldn't jump at the chance of having a child without it?
10-20-2011, 05:24 AM
1. Although there are not many visible handicapped people married to others or non-handicapped people, there are exist enough to have sex and give birth to children. I don't know if statistics exist (the only possible large group with similar conditions would be the Contergan children, where the condition is not genetic).
Statistics are different to come by and would be difficult to establish because the extent of the disease and the limitations from it vary so widely among individuals, even when we talk of common diseases.
2. A doctor advises people about the risk of pregnancy, but usually can not forbid it in a free country. (Non-handicapped people can also have risks for pregnancy that don't impact their normal life, and some decide to go ahead despite). If she refuses to abort despite medical reasons, the doctor can't strap her down and abort anyway.
They might have had a cesarean section with a preemie and the last weeks in an incubator - medical technology can help a lot today. She was also probably monitored a lot to counteract any problems, more than a normal pregnancy.
I assume that she had figured out a way to have sex without too many injuries if she's been doing it for some time, just as she (and other sufferers of glass bone disease) have figured out how to live their everyday life without major accidents.
3. Yes a pregnancy is stressful even for non-handicapped mothers (cracked had an article on how the old saw about a mother loosing one tooth per child is roughly medically accurate - in terms of calcium). However, that doesn't make it impossible.
I've seen reports of mothers in wheelchairs raising non-handicapped children, dwarfish mothers, mothers with most of their lower portion missing. (A question that tends to crop up a lot seems to be "How do you discipline your kid when at age 6, he's already taller / more mobile than you?" the answer is "Well, like every other parent, with voice, stern look and presence, of course." since the assumption that you need to be able to beat your child or tower over it to get authority is of course over a century out of date).
The only problem in case of a healthy child and a handicapped parent are psychological ones: that the child becomes a helper too early, feels too much obliged to help instead of play, or, if the disease is serious, worry too early about their parent dying on them.
But with the child handicapped, too, he will be fully understood. There will be less of a problem being a drag on the resources of a normal family, the whole family centering on the one handicapped child with the siblings pushed back, less of the question "why me especially?", more ease in "how to accomplish your daily life, because that's how I do it", less problem of overprotection.
There are also gradations of this disease, I believe. A neighbor's son has it and he has now grown to adulthood. It was first diagnosed after about the second or third broken bone he experienced in early childhood. The parents were interviewed by the authorities to assure they weren't abusing the child. I don't know what treatment he was given, but obviously his case was nowhere near as severe as the stories above.
09-27-2012, 04:49 AM
gday i have this disability and we do anything that u can do and i am 3ft tall and am not severe and there many type of OI so ppl break variouse amouts of bones some break more if there severe but it can be the other way round and break more if ur mild and with chest infections all of us get them coz our lungs arent developed n i know lots of people thatt have a strong sex life they just do things a little differentl eg:using a pillow to make them more comfyand as for childbrith alot of my friends with my disability have chicldren i love it if anyone has Questions please ask away
09-27-2012, 07:10 AM
I realise this is an old thread and Dorabella may have moved on, but here's a link to an article about a woman with brittle bone disease who was expecting her third child:
09-27-2012, 08:05 AM
I recall someone commenting that a healthy kicking baby could possibly break a rib (from the inside) even on a healthy mother. So - sounds like it would be a risk, but someone who has had numerous broken bones over their life probably was willing to take the risk.
IANAD - I assume that the pelvic bones (plus the child, if they had the disease) would be at serious risk during childbirth and likely it would be a cesarian.
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