My disabled child

@maximax8 (27048)
July 19, 2007 12:24pm CST
My son was born in May and he has spina bifida. I only found out at 36 weeks pregnancy. He has had to have two operations: one to mend his back and one to put a shunt inside his head. He does not have much movement in his legs. He does exercises to make his legs as strong as possible. . He feeds very well and is growing quite nicely. Today he had an appointment in a hospital. The consultant hardly looked at him. But he said some very upsetting things about what my baby's future might me. I wonder if he will be able to walk. It was sad when i heard he might not be able to talk. I feel that the medical people always tell me the worst and it all turns out to be nothing like that. Have you got a disabled child? Do you know any disabled children? How well do they manage to live?
10 people like this
16 responses
@kareng (7986)
• United States
19 Jul 07
I'm sorry to hear your news about your baby. I think this medical professional was very rude to you to deliver this news in such a fashion. What happened to medical personnel having compassion? Has society gone to such low levels to not have any compassion for others? I think I would change doctors and definitely get another opinion.
@maximax8 (27048)
19 Jul 07
Yes, I don't think I will want to go to that hospital again. Thanks for your superb response.
1 person likes this
@jillmalitz (5132)
• United States
19 Jul 07
I guess that some doctors prefer to give a worse case scenario and hope for a better outcome. Years ago a friend of mine had a child with the same problem. Though he could not walk he grew into a normal young person. Look up some support groups of parents who have children with disabilities. They can be a great source of information and help. Good luck.
@maximax8 (27048)
19 Jul 07
It is lovely to hear that your friend's child grew up into a normal person. I am in contact with a lady that has 7 month old son with spina bifida. I would like to join some support groups.
1 person likes this
15 Oct 07
your son will be just fine. Keep him active in disabled sports if there are any in the area. Encourage social interaction, that is key. As for medical things, sure he will have a lot to deal with, I have spina bifida myself. These things are not that hard to over come, but its important to instill a good sense of self worth in your son so he doesnt begin to think "why me?" and all that junk because its never healthy for anyone.
1 person likes this
@cripfemme (7719)
• United States
3 Aug 07
I was a disabled child. I'm 31 now. I live my life and love it. I wouldn't change a thing, accept my plastics allergy. I'm active in politics and activism (I even ran for office), the arts, and I go out with friends all the time. I live in my own apartment with personal care assistants paid by the state to help with daily care needs. I think it's very important to treat your child normally, have exspectations for him, just like you would of any kid, accept and accomodate his disability related needs. Don't treat these needs as "special" just as part of who he is. Make sure he loves and respects the body God gave him and all it's imperfections (because no one is perfect). Even let him try stuff that scares you a little like hoing to summer camp or going aboad for a semester or event. You'll raise a well rounded disabled person and I, as a disability rights activist, am grateful for one more of those in the world!
@Stiletto (4597)
19 Jul 07
I haven't got a disabled child but I used to work with disabled children and adults and my friend has a brother with Spina Bifida. He is confined to a wheelchair but he is married with two kids, he has a full-time job, he has a busy social life, in fact his life is just as full and active as mine. I think that doctors feel obliged to give the worst case scenario because I guess if they didn't then people would be turning round saying "you never told me.." Your son may have obstacles to overcome but that doesn't mean he hasn't got a happy and successful life ahead of him. You may have already seen this website but if not it's worth taking a quick look just to lift your spirits a little - http://www.jeandriscoll.com/
1 person likes this
@Zorrogirl (1481)
• South Africa
19 Jul 07
My babys first nanny had a disabled grandchild. she is 2 now and started crawling. to the amazement of the doctors. her spine is s-shaped with deformed feet. she is also very smart and is doing well. the thing with doctors telling us the worst, is because they have to. by law. my sister is also studying towards a medical degree. if they didnt tell you the worst, people could sue them for not disclosing all the possibilities if something went wrong. i am disabled myself. due to accident. doc always gave me worst case scenario. i also felt distraught but after finding out why they told me the harsh details, i understood. i shall pray for your child.
@maximax8 (27048)
16 Oct 07
It is lovely that she is crawling and amazing the doctors. I am sorry about your accident leaving you disabled. My baby is moving his legs a little bit and his arms are very strong.
• United States
27 Aug 07
My daughter does not have spina bifida, but she is severely disabled. She may never walk, have no way of knowing now. She's almost four, and she started crawling when she was about three. Doctors NEVER tell you the best case scenario. They always tell you the worst case scenario. I wouldn't listen too much to the bad news the dr gave you. I would try and find a parent of an older child with SB and talk with them. And remember, EVERY child is different - disabled or not. No one can tell you your child will or will not do something!
• United States
3 Aug 07
This is from a commercial on television (I know - silly - but worth hearing): A woman is diagnosed with terminal pancreatic cancer. The doctors tell her she has three months to live. She goes to the Cancer Treatment Centers of America (A new treatment facility that focuses on Western and Alternative Medicines). She goes through tests there and the doctors determine she is a good candidate for treatment. She asks one of the doctors, "Do I only have three months to live?" He said to her, "I don't see an expiration date stamped on your foot." I agree with you that many doctors are so negative and paint the absolute worst picture possible. The reality is that many people (especially children) make astounding recovery. Don't believe what you hear - believe what you see, feel, experience with your child. Don't give up on him. Give him all the love and attention, care, and hope you can. Don't coddle him as he grows up but force him to do as much as he can for himself. Sounds like you might want to seek out the support of other doctors who are less negative! Good luck!
@Gemmygirl1 (2871)
• Australia
22 Jul 07
Unfortunately i don't have or know of any kids with disabilities :( However, i don't understand why it took so long to tell you what was going on with the disability? Don't they usually do a heap of tests at around 19 weeks for all of the disabilities so you know well in advance? I wonder how they managed to miss something like that, if that's the disability they are actually checking for. Well, here in Oz, that's the main disability they check for. I hope everything works out well for you though & with any luck, the Dr's do the whole worst case scenario though, that way, you don't get your hopes up too high only to be let down later on.
@cheodej (102)
• Germany
20 Jul 07
i felt sorry for your son. i help you pray for his condition that can might be better. hold on and have faith!
• Philippines
20 Jul 07
I have encountered such condition during my college days. All I can say is that think positively, doctors are just preparing you for the worse. and now that you know work something out so that individuals like your child can lead to normal life or at least close to it. There are assistance available and other people that can help you and your family cope with the situation. make your child feel that he is normal and make a happy family for him/her.
@sunkissed (4332)
• United States
20 Jul 07
No, I do not have any disabled children. i am so sorry for the spina bifida that your son was born with, and all he surgurys he has had to go through. I do not know if he will be able to walk, but I do pray he will. there is so much modern technology, and who knows what medical advanced they may come up with in the future.But I do know that every child is a blessing, and if they are born with a disability, that in some way they are special in other ways.I wish that the doctors would have better bedside manners, they could talk to you so much better, but i suppose they must tell you the worst example,just incase.Keep your head up, and pray.God will work it all out.God Bless.
@phon4u (2217)
• Laos
20 Jul 07
I don't have a child but I feel very upset for your children. I hope you would have not taken any medicine in the previous time be pregnancy. I think you should find the disable community for your children to share their own opinions and they can learn from the groups.
@subathra (3519)
• India
20 Jul 07
I feel teh doctors should neither assure us with false promises nor completely give away saying nothing could be done.i hope your son would be able to do better in a slow pace. I know one of my family friend who is having a 4 year old son with slight disability in vision, talking..I have been watching him from his birth..he has 3 operations as of now and undergoing physiotherapic and occupation therapy treatment every now and then.He is improving a lot.Like your son he had problems in legs and he had now power in legs to stand or walk till 2 years and went for regualr treatment and he is walking as like other children now. so please dont worry and loose hope.Never stop treatment and try various means to improve him..
@_hope_ (3917)
• Australia
20 Jul 07
Maxima the drs have to be open with you and tell you what to expect they are just doing their jobs .I know it seems very hard a calious but it`s the best way .You need to plan for sons future now.They will tell you what the worst is for you to expect .Your little one could very well prove them wrong as a lot of other little children have do so in the past . Continue strengthening your sons legs as there is a great possability that he will indeed walk ok ,he will however need to have strong legs to help him get about . I nursed many children with spina bifida some are more effected than others and only time will tell .Don`t go by what the dr tells you every child is different and they have so much more get up and go than most adults they have lots of fight in them . One little girl i cared for for many years was such a treasure and to see her prove every one wrong ,by walking and competing in numerous swimming carnivals was so awesome .Today she is a most beautiful young lady and i`m so pleased that i had a chance to get to know her . When one of my babies were two months old i knew in my heart that something was wrong she slept all the time ,never cried and didn`t even make a noise .At a clinic check it was found she had problems and they referred me back to see a dr where it was confirmed that she was indeed deaf and had severe brain damage .I was so so upset to hear this here was my beautiful baby with no future ahead of her . The dr referred me to see a neurologist in a major city here .After a week of cat scans and numerous tests we went to see the dr the news was fantastic there was minimal brain damage and she had some hearing but would end up loosing her hearing as an adult as a result of her condition .I didn`t care she was ok .That first dr upset me no end but he had prepared me for the worst where infact the news wasn`t good but it was a darn side lot better than what we first thought . God had given you this special little angel who will requier a bit more care than most he knew when he sent him to you that you were the best one to take care of him .Follow your heart and do your best you will soon se your son grow and mature ,he may be a little different but one thing to remember our children are only given to us for a short time take advantage of that and make the most of it .I hope you all have a wonderful time growing together.
• United States
19 Jul 07
i know some people who have disabled children, they look at them as blessings and no matter what the doc says, they pray to GOD and know that everything will be ok for their child one day and that is what keeps them going, so they can get them to that point. i wish you all the luck in the world and may GOD be with you!