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[duke748]

Hello. I have been recommended to come and post on here by some of your regular posters who have seenmy post over on the 'Pregnancy' board.

I just wanted your honest feedback on your experiences on bring up a child with special needs. Impacts on both yourself, the child and other relationships in the family. What is life like day-to-day? What sort of daily are is needed?

I am pregnant and my doctor is recommending I abort due to exposure to a drug called Isotretinion during the early part of my pregnancy.

Here is some information on the possible effects of the drug:

"The risk for having a miscarriage may be as high
as 40% when a woman takes isotretinoin in early
pregnancy.

Isotretinoin causes a pattern of birth defects in
more than 35% of infants whose mothers take the drug
during pregnancy. Most of the infants with birth defects
will have small or absent ears, hearing and eyesight
problems. Some will have a small jaw, small head, cleft
palate and some will be born with a small or missing
thymus gland. Life threatening heart defects and fluid
around the brain are seen in almost half of the exposed
infants.

Many of the exposed children will have moderate
to severe mental retardation. These difficulties do not get
noticed at birth, but are discovered in childhood. The
long-term effects on any exposed child are still
unknown."

I would really appreciate any help you could provide me about caring for a child who has special needs. I guess I am trying to get a handle on what life could be like for everyone involved.

Thanks so much for your help. I really appreciate it.

Duke.

xXx

Duke, never mind the advice...I think you're in need of a large cup of something and a hug off someone. Goodness me...what a situation for you .

Plenty here who can talk about life with children with similar birth defects that you mention. I know of many people who have decided it's too much, and many others who have carried on and found it's very hard work, and many others again who have carried on and found it's worth every moment of that child's life for them.

I don't understand their statistics, to be honest. If it's 35% that have a birth defect, how can it also be half of them that have heart defects and brain problems? It's not at all clear.

Duke, sorry for what you are going through, such a worry

I can only speak for myself and the situation I am in, which is very mild compared to quite a few others on this board.

My son was absolutely fine at birth but started fitting every few minutes 12 hours later and ended in NICU and was diagnosed brain damaged.

we were told he would probably be blind, but he sees very well indeed. His head is small but we do not know what that means yet (he is 11months), he is so far only showing signs of cerebral palsy. There is a significant risk of epilepsy.

He is my absolute sunshine, my determined little man and a real giggle with a wicked sense of humour as you as he is. So far the worry is worse than the reality, but we will not really know what is what unil he is much older. sometimes I would want to fast forward to see what he will achieve. Whether he will have learning disabilities, whether he will get epilepsy and how bad....just have to wait and see.

And that is something you would be faced with too, you would not know at birth what you would face.

I would not swap him for anybody in the world and I would not want his disabilities fixed if it meant changing him in any way.

Sounds like you could have a very healthy or a very severely disabled child, and anything in between.

I wish you all the best in deciding and planning

Caring for a child with Sn is both hard and rearding for most famillies I thinkI don't envy you: i have 2 sn children and have been told there is a greater than 50-50 chance ds4 will have sn too (autism in ur case, again a starts in childhood thingy)

it is had, ever sleepless night is a worry that it's starting; every temper... but it is worth it and we are so gad we have him each day. He makes every day a bit brighter.

Good luck with your decision

In your heart, what do you want to do?

I think its impossible to give advice as every disabled child is different. My dd has severe cerebral palsy and epilepsy. She is unable to move, even to roll, requires 24 care, no hand function and is partially tube fed.
BUT, she sort of didn't arrive like that. She was a little baby like any other baby who needed what all little babies need.
I wouldn't be without her for a single second.

And all I could say is what I'd do in your situation which is wait and see. I couldn't abort for disability. Life is different from a non-disabled child certainly but even if a baby is born non-disabled there are no guarantees anyhow.

I don't know what to say really as its an awful situation you are in. The not-knowing. your baby could be fine.
I can tell you about life with dd but I'm not sure how relevant that would be. I did grieve when she was born, I grieved for the 'fantasy baby' I thought I was going to have. I grieved for things dd will never do (and still do) but when they told me she wouldn't live all I know is I wanted her to live more than anything else in the world and felt hugely protective. The doctors were wrong about so mnay things with dd. We were told she'd never know us. She does. We were told when she developed infantile spasms that 95% of cases lead to mental retardation. It didn't. We were told she would never see. She does, to some degree. We were told she would be intellectually impaired. She wasn't.
But we did have to wait and see. And we were offered the option to remove her ventilator if she needed one to breathe (at that point she was 3 days old and on 4 epilepsy meds that made her unable to breathe for herself). I made them take her off the drugs in order to see if she could breathe for herself and would have let nature take its course, not actively done anything, IYSWIM.
Well, here's me wittering on in a not very helpful manner.

I'll witter on a bit too, basically rehashing what everyone else has said.
I had the 'perfect' child for 2 days then he was desperately ill with hypoglycaemia, which left him with severe brain damage. When they told us he would die, I was devastated beyond anything else I had ever known and prayed that we would be able to take him home, even for a short time. But, my stubborn little boy put up a good fight. We took him home, minus the ventilator and feeding tube, drug free, and bottle fed 4 weeks later.
I agree that I grieved for my perfect child, then I realised that the one I got was just as perfect - a bit different - but perfect all the same.
At 6 weeks of age he was given a dire prognosis (would never walk, crawl, talk, sit up, smile etc. - what we had then was it). But he proved them wrong and smiled the following week. He hasn't stopped since really. He can laugh and scream with delight, is trying to weight bear and slowly starting to use his arms (he is 6 months old now). What the future holds for him, we just don't know. He has recently been suffering from infantile spasms which has set him back a bit, and has been difficult for us all. Epilepsy in some form or other is now pretty certain. He also has some degree of visual impairment. He is significantly developmentally delayed.
Other than that, he is an absolute joy. Wonderfully happy, headstrong, stubborn little man - who is our world. It is hard. Medicating him is difficult. Watching and waiting is just the most awful thing, I sometimes find myself wishing his life away, so I could know what I'll be dealing with at 1, 2, 3 years of age.
BUT - hearing him laugh never fails to cheer me up. His courage inspires me. Each little milestone is a massive achievement and we've learned to appreciate them. I couldn't imagine my life any other way. It is a rollercoaster, I can go from very high to very low several times a day! But as the weeks have passed it has become much easier.

If I had any inkling of what was to come before he was born, I'd have been terrified and never believed that I could have coped - let alone been happy. I cope pretty well (most of the time ) and am so very proud of him.

You are in a horrible situation, I am sorry. I feel very differently now in that I would not consider terminating a future pregnancy on the basis of disability even with DS here already. I think I would have considered it before he came into our lives. I think you have to be living it to really know.

The best of luck with whatever you decide. The only thing I can assure you is that, if you go ahead, you will love your baby more than anything.
And if the stories on here tell you anything, its that nobody really knows how it'll be for any child. No doctor can see in to the future, they can give you possibles and probables, but I've learned to listen to them, take them on board, but let DS decide what he is going to achieve and when he is going to achieve it.

Thank you so much ladies. The stories of your lovely little ones inspire me.

I only hope, that if it comes down to it, I can be as brave and selfless as you have and continue to be.

I get that it must be the not knowing that is the most worrying, I have already had a small taste of that already!

To answer the question, I don't think I could abort at all. I never knew I had such a strong opinion on it, but I don't think I could book the appointment and turn up, I couldn't actually DO IT.

I just want to have a realistic idea of what life might be in the baby survives in my tummy for long enough to be a baby.

And yes, the stats in that piece are a bit confusing. I think what it is saying is:

40% miscarriage
35% live with 'abnormalities' - of which half are life threatening
25% are 'normal'

In a way its not the physical things that worry me. These things can be 'fixed' to some degree. Though the attitudes of others to facial abnormalities must be hard to deal with.

Its more the mental issues that I find hard to get my head round. I've had a pretty tough and lonely life, but I have always felt I could rely on my brains to see me through the hard times. To me intelligence is one of the greatest gifts in that it has made me able to improve and enjoy my life. I hope that came across as I meant it.

Thanks for all your help so far. you truly are an inspiration. You have given me alot to mull over.

Happy Christmas eve to you all.

Duke.

xXx

ps- Sorry for not titling this thread - I forgot!

my friend was on lithium for depression when she fell pregnant and didnt find out till she was a few months gone, docs told her taking lithium in early pregnancy was extremely damaging but not to stop taking it as the depression would have been worse to deal with and the damage had already been done.

they reeled off a whole list of abnormalites associated with lithium use, the worst one of which was a severe heart defect which meant her son could die within a few minutes/hours of birth or would at the very least have to go through a big operation straight away if it looked fixable.

they advised her to terminate too, they faffed around alot saying one thing then another and doing tests etc so by this point she was around 22/23wks pregnant. my son was born at 26 wks so she knew what that looks like.

she was at a loss as to what to do, i asked her what would be worse terminating knowing there was a chance he could be healthy or having him and getting the chance to meet him and possibly say goodbye or take the chance that an op could fix it.

she decided to go ahead with the pregnancy and other than the cord round his neck an a few wee breathing problems he was and is perfectly healthy. he will be 1 in february.

doctors always paint the worst case scenario, and if you google any condition it always sounds 100 times worse than the reality, sometimes it is that bad but sometimes its not. and to be honest parenting a child with special needs isnt always bad, just different

Another point- one 0of the hardest things aboout a sn child is the loneliness

By finding us you've already made a start on that! Sn boards are pretty amazing. And whatever happens, it's rare one of us hsn't a clue.

A step ahead already

Peachy, I think I am a bit emotional (Christmas and all that) but the recognition I felt when I read your description of the loneliness has made me cry, you are so spot on. I have never articulated it before, but I feel very isolated sometimes. Thanks for 'de-isolating' me, if that makes any sense at all......? x

Oh, sorry OP, good luck with whatever you decide.

Nothing much to add, my ds' SN are so mild in comparison to others on here, (at the moment ds is language delayed, possibly with high functioning autism) but they impact us in the number of appointments we have to attend (and arranging childcare for ds2, taking time off work etc), plus the additional thought and planning which goes into explaining issues to ds or taking him on outings or holidays. It can be tough to see him around other children his age and notice the difference, and not to be able to have the little conversations that other parents are able to have with their children.

You sound lovely and I really hope it all works out well for you all, however that may be. Best of luck.

Am afraid I started miscarrying on Christmas day and still am now.

Without giving TMI, I know its definately a miscarriage.

Am of course very sad and in a fair bit of pain. Its just been a total rollercoaster of emotions.

I am going to continue to try to look after myself and hopefully can start to look forward once New Year rolls around.

I'll never forget this experience or my little bean though. Its definately taught me alot about myself and my beliefs.

Thanks again for all your help and support ladies, you have helped me more than you will ever know.

Duke.

xXx

I'm so sorry, Duke. xxx

So Sorry for your loss Duke xxx

I will be thinking of you xxx

So sorry to hear your news. xxx

Take care.

I am sorry. I hope you are OK. xxxx

So sorry, Duke. I hope that once the raw pain has faded a little, that the fact that you had decided to fight for your darling child will bring you a small comfort. Be really kind to yourself, and rest up xx

oh duke, so sorry to hear this, take good care of yourself xx

Sweetie, I was going to post my experiences, until I read about your miscarriage.
Take care of your self and allow your self to grieve. My mam miscarried at 24 weeks years ago and she didn't grieve until my ds was born, she then needed quite intense councelling xx

Oh duke, so sorry to read your latest post. Thinking of you. x

oh duke

wish I could say something that makes sense

Sorry for your loss