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'm going to try not to judge here and give your DH the benefit if the doubt.
The way I see it is this...
you're having a baby. its exactly the same baby it was before you got this news, it's perfectly healthy, and when you see it it will be the most beautiful baby in the world to you.
You could terminate, but, and this is the best advice anyone can give you right now, do only what YOU think is right and what YOU can live with. At the end of the day, your DH is irrelevant. He isn't the one who will have to deal emotionally with this for all time.
I have a DD with Downs. DP was very keen for me to terminate. I refused. My reasoning? Because if I didn't, he might never forgive me, but if I did, I would never forgive myself. I gave him the option to leave. He stayed.
He was upset. But it was because he was frightened. He's very down to earth and set in his ways and he couldn't see how life would pan out and it made him very worried and scared. its very hard not to be when you're faced with a problem, because before birth you only have a DISABILITY. It's only after birth that you realise that first and foremost you have a BABY. Just like any other. Who poops and eats and pukes just like any other and loves nothing more than a cuddle.
DD is an absolute joy. She could have 2 heads and 7 arms and I'd still worship her. And her Daddy adores her.
Your child has a short arm. Maybe a deformed hand. its not the end of the world.

I can give you an anecdote about a young chap with the same affecting both arms, he has a good life. However there are plenty of those here. I can also give you one about an adult man who struggles emotionally with one hand/arm affected (although not really struggling physically).

But what I think is most important to say is that only you can decide and whatever you decide is ok. Some people would do the same, some wouldn't but this is about you not them. I feel you need to make your decision and your husband needs to make his then decide how/if you can reconcile those individual decisions - your may even decide to continue your pregnancy alone. After that you can decide if you are going to tell others - because you don't have to. You don't have to justify yourself to others. All that matters is that you can cope with whichever decision you make.

Before posting I would like to stress that I am totally in favour of women's right to choose.
I would not question it in the slightest if you or anyone states she does not want a child at that point in time and wants a termination.
However the issue of "quality control" makes me queasy. Where does it start and where does it stop? I have issues with an approach that will discard one less than perfect baby and then try for a perfect one. A lot of disabilities originate from birth. How would you cope with that? What if your next baby is autistic? You will not know for a while. What if he\she gets disfigured at some point? Or re the concerns about sportiness, what if the child simply hates sport????
It is a difficult decision and only you can make it but having a child will carry risks, nothing will go fully to plan and you cant avoid that.

OP I am sorry you are in this situation.

There are no right or wrong answers.

For what it's worth if I was in your situation- and given that you are only 12 weeks pregnant- then I would terminate. I would be concerned about multiple surgeries, pain, prothetics, how this would affect school life etc.

If I gave birth to a baby with such a problem I would embrace it and do my best to work with the disability and make sure the child had the best possible care and support.

But a choice at 12 weeks. It would be hard but I would terminate.

A lot of disabilities originate from birth. How would you cope with that? What if your next baby is autistic? madwoman- of course, and most of us would accept that and make the most of the situation..
But the OP has a choice- that's the difference.

You say that terminating a "less than perfect child makes you queasy"- what if that "imperfection was life limiting or severe, or would cause your baby to die within a few days of birth- would you still feel "queasy" about termination?

You say that terminating a "less than perfect child makes you queasy"- what if that "imperfection was life limiting or severe, or would cause your baby to die within a few days of birth- would you still feel "queasy" about termination?

That's a completely different situation. I am guessing almost every poster would be saying they'd terminate under those circumstances. Here part of the baby's arm is missing. It will obviously affect their life but to a completely different level.

Such a difficult situation OP.. And of course you have to consider your husbands feelings too you both will be raising your baby. Its your body but its both your child, you dont want to wreck your marriage, both your opinions matter. Then you decide but both opinions matter.
I think you need to sit down and have a serious conversation.
People do go on to have happy lives with a disability as many have pointed out here but I understand the other side.
With my life and family situation I would be more inclined to terminate. Other life, other family situation might come to a different conclusion.

Sending you lots of strength !

No I do not have an issue about termination. It is the woman's choice. I do not think I would carry a pregnancy with a severely life limiting condition. My last pregnancy ended at 21 weeks due to downs, I did not know the baby was affected, I am glad I did not have to make a choice and I am kind of glad (now) that it ended the way it did. However I do think this is a different scenario where the woman is put under pressure to produce a fully perfect baby even though she quite clearly appears to have bonded with the pregnancy.

Being born without a hand is a fairly serious deformity in my view.

For what it's worth, my son has had no surgery, doesn't want prosthetics, has no pain and no trouble with school life, as propel suggested may happen.
All the best with your decisions

Hoot

InLondon, re bullying/feeling an outside in school etc: so many children/young people go through that whether they have an obvious difference or not - I think how badly that affects a person depends on how it is being handled by school/parents and their individual personality.

I've also remembered another story: I know a young woman who was born with a deformed foot and had a below knee amputation as an infant. She grew up with using various prothesis (obviously they had to changed frequently as she grew). Her mother always, always introduced her as "Hi, this is X, my daughter the amputee" when she was a child - I cannot begin to describe how dreadful this woman was.
X now has a family of her own and, all things considered, has turned out well.

I hope this thread has given you some help in finding a decision that's right for you

Hi OP

I don't think what I will say is any better or worse than anything anyone else has said, only to echo what has already been pointed out, that no baby is ever physically or perhaps mentally perfect, there is always something wrong, somewhere, be it a slightly different hand, or a spectrum disorder or a trisomy.

If the 'imperfection' isn't enough to kill the child, or give them ongoing horrible pain, etc, then that would be my answer - I would be looking at the happy baby on the screen and thinking, that baby doesn't give a stuff it's only got one proper arm. Who am I to stop its development here?

So I would not terminate. But I am not you, and you may have other considerations that I haven't thought of.

I am sorry you feel forced to choose and to make a decision. My decision was always by default, pregnancy is not universally easy to survive and any child that does deserves a chance. Hope that doesn't come across horribly. I am certain that given different life experiences I would probably think otherwise.
Take care of yourself whatever you do You're not a bad person in any case. You just want the best for your child, but I think it is easy to confuse wanting the best for your (actual, imperfect) child with wanting the best child you can have, whether it is this one or another one.

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 think you just described my son in his lower moods.

Physically, he's perfect. In fact he sometimes says it would be easier to have a disability people could actually see.

It does make me wonder, had I known about my son's dyslexia, my other son's stutter, at the 12 week scan - would I have terminated as their lives would be hard work?

I think the answer is no, but I'd feel a feckload of guilt either way. I think sometimes we just have too much information and combined with the flashing green 'exit' light that is termination, it is a no win situation for many parents.

Guilt if you terminate; guilt if you don't. 'We knew, we should have done something' or 'We should have given him/her a chance'.

That's why I take my default position - pretend I don't know. It's a baby, it's inside me, it's ALREADY ALIVE. I don't get to choose if it stays alive - nature does (or God or whoever). I'd rather not have the choice and so having the choice, I refuse to act on it. Iyswim. I'd pretend I never knew, and let things just carry on as before.

Its completley your descion. For me the missing lower arm is such a small thing. I wouldn't terminate.

As for forcing a disabled child are your dh you are not.

I grew up with two different friends who were each missing an arm, I would never have considered either of them to be disabled at all, they both adapted. One still can't use those wine things where you have a tap in a cardboard box. Apart from that I can't think of anything either of the can't do. ( and several things one of them can do with her prosthesis, that I can't!)

I know two people who have abnormalities like this - one has short arms and hands aren't fully formed and the other has a visibly curved hand. Of course nasty comments have sadly been made but it hasn't physically affected them. Both went to uni and both have great jobs and don't allow their disabilities to stop them living. You would not be forcing anything on your husband but I wish you the best whatever you decide

Under the circumstances I would be wondering if I wanted to keep my DH or not, I know that baby missing or having a malformed limb would not be factoring in to my decision.
If he is only interested in a child who he can guarantee will play sports with him then he may be in for a disappointment however 'perfect' your child starts off.
How would your husband feel if you had a 100% normal baby who developed a debilitating disease or illness or who lost a limb due to an accident? Would he disown them or give them away because they were now a hindrance?
None of us ever know what our and our families future health will look like, you need to ask yourselves whether you will be able to offer unconditional love whatever life throws at you.

For what it is worth my friends mum has one arm that stops at the elbow, it has certainly not prevented her from leading an active and very normal life.

I do believe that women should have the choice what to do with their bodies and if you simply cannot face the idea of a having this child then it is your decision to make and yours alone. I really do feel for you OP.

I don't think anyone is suggesting that someone with a limb deformity cannot have a happy and productive life. And pickles you talk of someone losing a limb though illness- I don't think that is really the pont.

Women have terminations for all sorts of reasons, they may feel too young, or about to launch into university or a career, tey may feel they have enough children already, or feel overburdened. There may be 100 different reasons.

Termination because of a foetal problem, is no less or more valid.
All women have the right to choose. And some ( like me ) would choose not to continue a pregnancy with a problem such as the OP's has.

That may or may not be the right decision for the OP- and that is the whole point.
It's nothing to do with whether we may reject a child who lost a limb in an accident.

This is about choice.

I'm a bit like Pispcina, but I'd use the knowledge to be prepared. Read about whatever came my way, find support, and so on.

Ultimately only you can decide what to do together.

The only thing I would say is life changing injuries can occur every day, nothing in life is guaranteed. What if you terminate and for some reason, you don't fall pregnant again or that you have a m/c next time, life is full of what ifs. There is no perfect child.

Couldn't just read this and run....

It has to be a decision made by both of you, and not one that your husband has made for you, or what you think he would want more.

Personally if it was me and I was presented with this information, as long as my baby's wellbeing was OK in terms of organs functioning properly, no brain abnormalities etc I would continue with my pregnancy. Fair enough your baby would not have the use of one arm but is that really going to affect their mental capabilities? They will still be able to walk and run around and do things that any able bodied person would be able to do.

You have to do what's right for you and I wish you all the best of luck. It must be very hard for you.

My DD is 7 weeks old and has a similar issue with her leg (underdeveloped femur) and she is the most gorgeous little thing I've ever seen. She was born premature by 5 weeks and is now thriving. She's a little fighter and everybody is in love with her. Her. Leg will get more noticeable with age but who cares; She's here and breathing and developing normally.

I know two young women with underdeveloped or missing forearms/hands.

One represented Britain at the Paralympics. She used to compete in her sport with a fully abled bodied friend of mine, and her disability had so little impact on her that my friend once asked if she was left or right handed... They have never let her live that down!

The other I know separately, also happened to train with a Paralympic squad in another sport, is a mother to healthy children, and frankly one of the most intelligent, beautiful and competent people I know.

Its a hugely personal decision, but it's a disability that would hold very little 'fear' for me in terms of a child's future.

I know this thread is old, but I have lived through a similar situation OP, and am here to talk if you are interested.