Has anyone had a child born without limbs??

[horseshoe]

At my 20 week scan I discovered my DD lost her right arm due to ABS...

I was just wondering if anyone had any experiences that they might like to share with me!

sorry, no help, just wanted you to know your post had been read

Hopefully somebody will come along with some advice

I am sorry to hear that. What is ABS?

By ABS do you mean Amniotic Band syndrome horseshoe?

Thought it was a bit contentious, that one (the dx i mean).
However, whatever the reason for the limb reduction, your dd will quickly adapt and will almost certainly learn to do nearly everythign she would otherwise have done anyway.

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Have a look here for some more info

and here you can meet other people with abs in the area

Yes it was ABS......never heard of it before.

I have seen loads of sites that have explained it to me and that site you showed RMC has been a great help......

I feel fine with it now but I am worried how I will feel once baby is born.....I know that I will not change my feelings for her at all so I'm not saying that but wondered if there were any emotions I haven't gone through...might experience so I can get them in the open.

Is it normal for me to feel fine about it or am I about to be hit with a barrage of emotions......

I have only known a week and spent most of that time consoling others IYSWIM

ISWYM.

Happily i haven't been through it myself o i couldn't tell you how you might be feeling, but you may go through a period of grieving for your 'perfect' child. I can't imagine that you will love her less becasue she has no arm, although i can see why you would worry about your own feelings. You are disappointed- that's understandable, but it doesn't make you any worse or weaker a person- just normal.

There is a text called 'holiday in Italy' which was originally written by someone in the Downs Syndrome association, and although it isn't entirely relavant to you it might apply to some of the loss and disappointment you might be feeling now and in the future. i'll try and find it- have it on the computer somewhere.

HOLIDAY TO ITALY

When you are going to have a baby, it is like you are planning a holiday in Italy. You are all excited ? you get a lot of guide books and you learn a few phrases in Italian so you can get around. When the time comes, you pack your bags and head for the airport to catch your flight to Italy. Only when you land and the stewardess says ?Welcome to Holland? do you look at one another in disbelief and shock and say ?Holland?? What are you talking about? I booked for Italy.

They then explain that there has been a change of plan and you have landed in Holland where you have to stay. ?But I don?t know anything about Holland!? you say. ?I don?t want to stay.? But you do ? you go out and buy some new guide books. You learn some new phrases and you meet new people. The important thing is that you are not in a filthy, plague-infested slum full of pestilence and famine. You are simply in a different place from the one you had planned. It is slower-paced than Italy and less flashy, but after you have been there a while and you have had a chance to catch your breath, you begin to discover that Holland has windmills, Holland has tulips, Holland has Rembrandts!

Of course, everyone you know is busy coming and going to Italy. They are all bragging about what a great time they had there and for the rest of your life, you will say, ?Yes, that?s where I was going. That?s what I planned!? The pain of that will never, ever, go away. You have to accept that pain because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you did not get to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.

Part of a speech given by Diane Crutcher, Director, to the USA Down?s Syndrome Association.

That is very significant to how I feel and extremely relevant....I'm just grateful the plane hasn't turn round and arrived back in England and I found that after all that excitement, I wasn't actually going to arrive anywhere.....

Although I am grateful for this...I still have a little inkling of why do I have to go down to Holland.....I paid my insurance and ensured it was all well when you see other people not bothering to do as much preperation or complain about even going to Italy and then this is filled with overwhelming guilt that I am so selfish as I could have just returned to England.

Yet to everyone else I pretend to impartial to wherever i'm going.

Sorry...now i'm really not making sense.

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we caught a tiny ferry across the thames at twickenham the other week and the skipper had tiny, bent-back fingers on one hand. dd1 was fascinated and we talked about how all people are different..and I showed her some pictures of Alison Lapper too.

Horseshoe - this must be a very tough time for you.

Reach is an association for children with upper limb deficiency. Maybe they will be able to put you in touch with another family.

Thinking of you.

Blu's (gorgeous, fabulous, v popular() 4yr old son was born with a lower limb disorder - a missing bone and small foot and length discrepancy. She is on holiday atm but is FANTASTIC about things like this. I will let her know you are posting.
I knew someone with a shortened arm and only two fingers who went to drama school. She was very beautiful and it took ages to twig that she basically had one arm.

I was in collage with a bloke who had no arms (he had been affected by thalidomide). He is now a lecturer at university and carries out research into the formation of stars. He tooks part in sports and represented the university in one. Nothing ever seemed to hold him back

And jeremy Beadle had a withered hand!

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horseshoe, I don't have any experience of this or words of wisdom but I hope that when your dd arrives everything will seem less scary. Even though you know about her disability - it's still very much fear of the unknown. And your 4.40 post made perfect sense to me - it's a little how I felt after I had my miscarriage after doing everything 'right' and all around me were pregnant women doing everything 'wrong' and I did wonder "why me?" I hope the rest of your pregnancy progresses smoothly - very best of luck.

Thank you all for your kind words of support.....I Made a decision to write down all of my feelings last night and began with words like Scared......worried......fearful and then I looked at each word and asked why I felt that particular emotion and all of these above words were about me not my beautiful baby. I discoverd that my fears were related to how I felt after the birth of my DD (I had post-natal depression and the "motherly instinct" took a long while to be realised as i felt so helpless) and my fears and worrys were that I would do the same this time although I know i am stronger.....I realised that I would have these fears regardless of the ABS and that the ABS is just something at the forefront of my mind at the moment because i have only just discovered it.
When I wrote at the top of the sheet "ABS" my words changed to strength, protection, beauty, survival............
I also told my sister about the holiday to Holland and she understood me too. I then laid down as baby was so active and spoke to her for over an hour about all of the things we would do and told her about her family and her great nanny who's very ill at the moment and I knew that the bond between us was already there long before the ABS came into it all.

horseshoe,
I know a small boy of 6 who was born with only one arm. I don't know what else to say - there's nothing else that's different about him. He's as lovely as any other boy of 6. He goes to school, he has friends, he's normal. I cannot honestly say how I'd feel in your position but I know I have never felt sorry for him because he's just fine.
On a sillier note, I had a friend at university who was born with only one arm and she used a false arm. She was never openly self-conscious about it. After many occasions of losing it when out drinking and returning to nightclubs to ask if anyone had handed in an arm to Lost Property, I guess any embarrassment would be misplaced...

although it's an arm affected, not a leg, these people may be able to help put you in touch with other families with ABS in the UK

Horseshoe, I'm sorry to hear of your situation. I don't know if this will help, but I'll say it anyway.

Our dd was born profoundly deaf. No idea what the cause was, there's no deafness in my or dh's family, and our 4 year old ds is fine. Dd failed newborn hearing tests and we were subsequently told she had moderate hearing loss: we were sure this was worse, and our fears were confirmed when she was about 9 months old.

You will doubtless go through the 'why her/us/me?' scenario: well-meaning people - with 'normal' children - will tell you it could be worse - and you'll want to deck them because, as far as you're concerned, this is as bad as it could get for you, because it isn't what you expected or planned for. You'll feel envious of people whose children have four fully functioning limbs, and will rage inwardly (and outwardly) if your child cannot do the things other children can. I've been through - and am still going through this - with dd, although starting to come to terms with it now. It's a process I feel I have had to go through, but it's ultimately draining and it doesn't change anything. I do have days when I feel very down about the challenges dd faces, but it's better for me personally to concentrate on the positive.

I have to remind myself to focus on this: dd is a normal little girl - she just can't hear anything. She'll still want to do all the things that little girls want to do - just as your dd will - wear pink, play with Barbies, have sleepovers, wrap parents round her little finger etc. It's up to me and dh and our family to emphasise the normality while ensuring she gets the support and assistance she needs. Her deafness is a big problem - there's no doubt about this - but I don't want it to define her as she grows up. I also don't want her to use it as an excuse for being treated differently.

It's actually dd's first birthday today, and the past year has been an odd combination of the best of times and the worst of times. Looking back on a year ago, I never thought I'd be where I am now, with a child facing major surgery in the next 6 months in the hope this will enable her to hear some sounds (she's being assessed at the moment for cochlear implant). Equally, I never thought I'd have such a wonderful, happy, contented, beautiful daughter - and for that I am extremely grateful.

Thinking of you

Hiya Horseshoe!
Congratulations - I had missed that you were pregnant.
This is what I think. I think your DD will be perfectly fine because she has a Mum who has exactly the right attitude, and you will bring her up to have courage, confidence and self-esteem. The rest is practicalities. As you have identified, she is healthy. She has a bit of a mechanical difference - but she will deal with it.
I have worked with two people who have one arm, and both lead lives which have not been curtailed. There are certian practical challenges - it;s hard writing a cheque in a cheque book when you can't steady it with one hand (but who on earth uses cheques these days anyway!!), and some doors can be tricky if you have to turn the key and handle at the same ime. But if you can be a top sound man in TV with one arm, you can probably manage most things!

My DS, as Aloha says, has a small foot, fused ankle bones (no flexibility), no fibula and a 5cm discrepancy in length between his legs. At the 20 week scan the sonographer said 'your baby will never be a dancer or a footballer', and I lay there, covered in gel, and thought 'If my baby wants to dance, s/he will dance!'. (I didn't feel strongly about the football ). And you know what? As we came home from our holiday tonight DS carried out an energetic and step-perfect dance routine he had seen in Charlie and the Chocolate Factory on the platform at Luton Airport Railway Station.

STEPS are great (as Tissy says) and there is a v informative and busy American chat site called Limbdifferences.org - but as you say, you are likley to end up consolling other people!

I'm friends with the actor who was in the Virgin phone ads, too - he has hands but no arms (Thalidomide), and he is an accomplished drummer etc etc, AND everyone fancies him!

Enjoy your pregnancy and look forward to meeting your little girl.

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