Limb abnormality - don't know whether to terminate

[InLondonStill]

At our 12 week scan last Thursday they found that the baby's lower arm (radius and ulna) hadn't developed properly. The upper arm is fine but there is basically no lower arm and the hand is only half-developed.
We saw a second consultant at a private clinic today and he confirmed the abnormality, and said that it definitely wouldn't repair itself. He said the baby probably wouldn't have a functioning limb below the elbow, so the hand wouldn't work much or at all. They don't think it's genetic, just bad luck.

We really don't know what to do.
We got pregnant really easily this time and my husband thinks we should terminate and we will probably be able to get pregnant again and hopefully have a healthy baby next time. He is very active and sporty and he would find it hard to have a child with a disability.
It's obviously not what I want either but i feel really guilty thinking about a termination - i keep thinking that it's only an arm, everything else looks normal, and that it could probably have a happy life, it would just be harder on us. I actually hoped they would find a chromosomal abnormality too as then it would make the decision easier to terminate but it really does seem like it's only the arm (although we can't be sure).

We've had four scans now and each time i see the baby moving around it gets harder. Probably the pregnancy hormones aren't helping. But I don't want to force a disabled child on my husband unless he was fully committed to it - I know it's going to be hard, and he would be supportive but it doesn't seem fair to him. And it's not like I'm sure I want to go ahead anyway, i just really don't see how it's possible to make a decision about something like this.

I'm booked into a termination on Tuesday because I thought that if we're going to terminate i want to do it soon as it will just be harder the longer it's inside me.

The consultant today said about half of parents keep the baby when this is found and half terminate. He probably just made that up so we would feel okay but whatever we decide. On google all i can find are stories of people talking about how much they love their children with disabilities - there are no stories of people saying they made the right decision terminating.

Has anyone else had to decide something like this? Sorry for the long post. But I don't want to tell friends because i'm worried about being judged or people asking me about it later when i might not want to talk about it, so I'd really appreciate some advice. I just feel like a really bad person to be considering a termination.

I have a friend with an arm and hand like this. He has been very successful in life, and doesn't really consider himself disabled.

You could say to your DH, what if you had a 'normal' child, who was in an accident and damaged their arm, would he disown them? I'm sorry if that's a bit harsh, but I find it hard to understand his attitude.

What if you don't go on to another child?

What if the option is a child with a small physical disability which would be highly unlikely to limit their life options or no child at all?

Secondary infertility isn't that uncommon, or another pregnancy may take a long time - how would you cope with that, how would you feel towards your husband?

It's not an easy decision and YOU have to be certain it's what YOU want and to live with that decision.

I had a very unplanned pregnancy I was tempted several time to abort but I know deep down it wasn't something I could live with. It's a very individual choice.

How awfully hard for you

I don't think that anybody, whether they terminated a pregnancy for a physically disability or for any other reason, or whether they did NOT terminate a pregnancy for any reason, can advise you on this.

It is so utterly personal and every situation is entirely unique.
I think it is not uncommon for men to feel termination is the 'easier' option and IMVHO it is related to the fact that a. they don't have to actually have the termination and b. the baby is not growing inside them, so really, truly you need to be committed to having a termination, or not, as it were.

It is fine to have doubts and to not be sure what the right way forward is, but YOU need to be satisfied, after weighing the 'benefits' and downsides of either decision, that the balance tips one way or another.

IME once a baby is born, it is loved - functioning hand or not.
Many an amazingly able para-olympian has wooed the general public - so 'even' a sporty father with a child with a disability can learn to see the person and not the lack of limb or whatever.

Otoh, this may not be the right way of looking at it for you or your DH. The choice, ultimately is yours and yours alone - which can be quite a lonely place to be, and I am sorry you have to be considering this at all.

Ask yourself, if you miscarried tomorrow, how would you feel? Devastated? Relieved? A mixture of both?? If you terminate, will you forever wonder about the 'what ifs'? Or would you be able to try for another baby without regrets?

IME and IMO women who are fully behind their decision to terminate have not problem with the decision later on in life. Those who do it due to all sorts of external pressures are more likely to regret it.

It may be helpful in your decision making to look at this website re antenatal tests and choices.
Keep talking to your husband, what are your fears/concerns, what are his?

I am glad you have your termination booked, but remember you can back out at any point.

I have 2 disabled dc. Neurological issues. So they look fine & are physically healthy.

11 years I would have terminated had I known how my son would be. 7 years ago I would have terminated ds had I known how affected my son is by his disability.

No one has the right to judge you for your decision. YOU & YOUR dh will be the ones bringing the dc up.

Seek counselling. Talk to your husband. Be realistic. Take care of yourself. X

Oh, and we can all tell you about people missing a limb we know (I know a little boy missing a hand and it certainly has always affected his mother more than him) and not about the people who were never born with similar disabilities because we of course never met them. So, I actually think anecdotal stories don't help.

Op - this must be such a hard decision. I hope you find a resolution that works for both of you.

I have read so many good reasons above for keeping the baby. Of course disabled people are no less than others. I speak as someone who is deaf. However, I don't think I would have blamed my parents at all if they had decided not to have me, having known my disability (if that makes any kind of sense). I'd say that is kind of comparable to missing a lower limb.

In the end, you know what you and your family are able to cope with, and there are some disabilities which I know would have been too much for me. My friend happily had a baby who had Down's, and I know that would have been to hard for me. There should be no judgement from others or you on yourself whatever you decide.

It sounds as if you both need more counselling support to help you decide what you want to so, together. What has the hospital offered you?

You need to decide what's best for you, don't pay attention to what other people say, their opinions and experience of children with this disability aren't really relevant.

But you and your DH do need a pretty deep discussion, I think

Would it help you to make a decision if you were able to look at this situation from your baby's point of view, as well as from your point of view and your husband's?

The best man at my wedding (in 6 days!) has no lower left arm. He's a window cleaner and one of the best guys I know. He also runs the local footy team and is getting ready to compete in a marathon as the end of the year. It really is not a big deal

Here's another thought on the subject: having, or not having a child, is always a 'selfish' decision IMO. And as fourchette says, everybody has a different level of differentness (is that a word?!) they can live with.
Personally, I would have had a baby with Down's, but not one with Patau's (for which I carry a 1:4 risk) - that would have been my choice, but it does not make it right or wrong for somebody else.

Yy to keep talking and accepting whatever counselling you have been offered. ANC are excellent for helping you to clarify your mind.

There are a few mners with children with this disability. At least one of them has taken RAD ballet exams, as has my own dd who has a more complex physical disability caused by a birth injury. She is the smartest kid I know, has a higher iq than her paediatrician, and is currently training to be a downhill ski racer. A lot of the kids she trains with are amputees or have congenital limb issues. I can't imagine even asking any of their parents if they wish they had terminated - there is literally no reason they would have done so, and I would be considered out of my teeny tiny tree.

I get that it's a shock. I really do. But in the grand scheme of things, it's not that big a deal, and no one really knows what is going to happen at all - even with seemingly perfect pregnancies like mine.

With a sporty active dad maybe this could be a gold medal winning paralympian? Of course this has to be your choice and if abortion is right for you then that is the best decision, but my DS's best friend for 3 years (until they ended up at different schools but they still see each other a bit) has one arm 'normal' and one shorter with not much hand. Honestly 'disabled' is not a word you'd use about this boy - he is just as active and outgoing, bright and creative as any other child his age and 99% of the time you forget that there's any difference.

I know someone with the exact same disability who has run a successful garden centre and nursery, had a family and very full life. It has never been a disability and you never notice his missing hand. He has just won a Silver- Gilt at Chelsea.
He was born over fifty years ago so the first his parents knew about it was the day he was born.
I suppose having known him so long it would never cross my mind to terminate in your position but it must be a difficult one to make.

Ok, fairenuff, anecdotes may give some idea of what life with a child with a limb deformity/disability may be like, I accept that.

My first 'proper' boyfriend had a below-knee amputation after bone cancer treatment aged 17. He was one of the least 'disabled' people I've known. Keen cyclist and down-hill skier, focussed much more on what he was able to do than what not: he did not have a musical bone in his body and often moaned about that (I am talking about him in the past tense because I've had not contact with him in 20+ years - AFAIK he's not dead or anything).

And in the meantime - your dh needs to open his eyes a bit and actually look to see how many thousands and thousands of people with disabilities are sports men and women.

I live in a VERY sporty small town (I think highest level of Olympians per capita in the world lol - they are always popping in and out of the two schools showing off their medals) and kids here are proud of their own abilities, whether or not they have disabilities.

I am a little gutted that your dh is so openly discriminatory, and so closed minded.

Dd2 has cerebral palsy. She swims, downhill ski races, hikes, plays basketball, volleyball, horse rides, runs, cycles, plays golf, rock climbs, does ballet, jazz, skateboards...

It is not a matter of WHETHER a person with a disability can be involved in a sport, but how to enable it.

I've raised a ton of money for sit skis and hand cycles, and we have hundreds of people with disabilities taking part in mountain sports every year.

I am actually quite horrified.

I could kind of understand if his concern was that his child would face discrimination as a result... But he is the one discriminating.

I'm actually not sure I could parent with a man like this...

I think your husbands attitude is horrible. Oh you got pregnant easily this child doesn't tick all the boxes let's get rid and ty again.

I've never been in this position but it seems very drastic for a limb deformity. Please think long and hard before you make any final decision

blimey, your baby is healthy, just has a limb disability. your DH needs a kick up the arse

What swishy said

Can people please not be judgemental or name call the OPs husband? This is the ANTENATAL TESTS-CHOICES board.

not chat. Not AIBU.

It's NOT a place to JUDGE!

This must be a joke of some sort.
Whatever it is, it isn't funny.

Crispy. As I just said I think people should be sensitive here ....this is a board for discussion and support around Anetnatal tests and choices. not a place for judging or scoffing.

I just can't see how you get from the end of baby's arm is missing to a termination. I'm sure it must be a huge shock and you're both grieving over the 'perfect' child you thought you'd have. Let those feelings get resolved in some way before you rush into a decision that you can't undo.

This is a decision only you and your husband can make together with the help of counsellors so I'm not sure how the opinion of anyone else will be that helpful. Don't rush into a termination until you're absolutely sure that's the right thing to do.

Wishing you all the best in what must be a really difficult time.

Hi everyone, I really appreciate all the responses I've received. I'm going to read through them all carefully but i just wanted to post again as I'm worried that my post has invited criticism of my husband. He's a good person who is in a difficult situation too, and he's been incredibly supportive.

He only expressed these concerns to me as part of lots of open and honest (and private) discussions around our worries and feeling - the impact on the child's ability to be sporty is obviously only one of the concerns he has raised, my fault for it looking like this was the focus in the original post.

Mainly, he is concerned the child will be bullied, will be frustrated by limitations, will struggle, will be unhappy, will not feel "normal" (particularly we're thinking of difficult teenage years), will have poor self-esteem, may struggle harder to find a partner and have a family themselves, etc etc.

I share these concerns too - I also know great (and active) people with disabilities, and hopefully our child would be happy. Also I know that we might have a perfectly healthy child who is miserable. But I don't want to make it harder for them from the start. Life can be hard anyway! This is what our main concerns are - that we will have an unhappy child who has to go through lots of surgeries (the doctor today was talking about amputations and prosthetics) and isn't happy in their own skin.

I think I'll try calling the ARC line tomorrow, thanks for this suggestion.