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 wonder how a bunch of men/fathers would respond to the OP's situation.

And yes, can we please lay off her DH just now?
What's said in shock is rarely considered and balanced.
Let's give him some credit.

x-post with you, OP

It's good that you are being open and honest with each other.

I hope ARC can answer some of your questions.

The child would be used to his or her impairment from the start, though... Children are amazingly adaptable. On the other side of the coin, there are lots of people with no physical disabilities who have unhappy teenage years or find it hard to find a partner.

Good luck with whatever you decide to do.

OP if you're not sure if you want a termination please don't feel like you have to go through with it for anyone else's sake.

Have you had a chance to discuss this properly with your DH or is he avoiding the situation? It may be that the shock of finding out that the baby isn't going to match up with the picture you both had in your heads and has made him panic which is only natural but you BOTH need to decide on the best outcome for your family but ultimately its your decision because the baby is part of your body right now.

Caring for a child with a disability is bloody hard, even a minor one and something you both have to commit to or you need to be happy to go forth alone if your DH can't accept your decision. The argument that your DH wouldn't turn his back on his child should they become disabled in the future is totally irrelevant in my opinion, there is a massive difference in choosing to live that life and needing to live that life!

Im trying to be sympathetic here but ffs it's only an arm! Your husband sounds like a dick. Even if the child had two arms who's to say they would be interested in sports anyway!

I find it worrying that you're considering a termination because of your husbands attitude. You got pregnant easily this time, that might not be the case again next time. Just read the conception boards on here.

I used to live next door to a young boy and his family and he had exactly the same limb problem you disguise.

He was always playing cricket in the back garden, could ride a bike no problem. His mum never mentioned if he was bullied or not so I don't know.

I never saw him with a false hand, don't think he had one. This was over 20 years ago. If you think about the great fake hands/arms, bionic type stuff which is been made its mind blowing.

Only you can make the decision with your Dh. I wish you all the best.

Hi I have nothing to add to the advice you've already been given ARC are fantastic. Hope i'm not x-posting but If you haven't already may I suggest you speak to REACH? www.reach.org.uk/index.php?option=com_content&view=article&id=61&Itemid=143 they have a helpline too, 0845 1306 225. A mutual friend's child was recently born with a hand deformity, which was seen on the scan. They were quite nervous understandably but they were really supported by REACH. Best of luck in whatever you decide to do.

OP I'm so sorry you're going through this. Regardless of the reason for considering a termination, you need to make the decision to go ahead with it or not by yourself. From your OP, it sounds like you want to keep the baby in your heart of hearts. If you are not absolutely 100% convinced termination is the right decision for YOU, it could drive a huge wedge between you and your DH. If you decide to keep the baby, of course it will take time for you and your DH to come to terms with the disability, but once he is here do you doubt that you would both end up loving this baby so so much? People can be amazingly adaptable and resilient. Share your concerns with your DH and find out exactly what is worrying you both. what are both your opinions on termination in general? What are your concerns for this baby if you continue the pregnancy? Are they deal-breakers? Good luck with your decision

InLondon - I agree that your DH is getting a beating here, and I don't think anyone should be doing that at this delicate time for you as it's pretty unhelpful.
I know I would be in conflict about this, as my disability has caused me to feel quite disconnected at times from others and I wouldn't really want my baby to begin life already with a disadvantage, as you've said. I would hope that people wouldn't think that I was a shithead for expressing these concerns.

Hope you find good support.

reach is a charity for upper limb problems

No judgement from here.

My anecdote is this one. My friend found out what you did at birth (leg instead of arm). The shock was immense. There was talk about amputation and prostethics for years and repeated visits to specialists.

Child now 10. Physically child totally fine - much more adventurous and abled than mine of the same age (riding bike, scooter, climbing etc). Emotionally absolutely fine till age 6. Did not notice any difference, did not care, friends the same. Bit of a wobble for a year or two re appearance, not wanting to wear skirts etc but soon passed. Never bullied. No one ever made a big deal. Changed a few schools without not a problem. We'll have to wait for secondary school I guess but that is tough for everybody I suspect.
No op done yet either so no gruelling hospital stays.

I bet that the child has had a pretty straight forward journey, the parents a bit less because of worrying about her, rightly so.

Good luck op. It is not an easy decision. Be kind to yourself and your dh.

I'd be thinking if I'd get rid of my child if he had an accident and lost his arm.

Your baby doesn't have a life threatening problem, one that will severely limit his ability to have a fulfilling life and be autonomous.

Would your OH also get rid of you if you had an arm amputated?
Or vice versa?

Whatever you do, you are not a bad person, least of all for considering a termination. Just make sure if you do it, that it is for the right reasons. Not just because your child may not be as sporty as your OH would like.

A fully able bodied child may not be interested or capable of being sporty - what then?

Sorry x-post. Glad to hear you're able to discuss it and support each other. Good luck again with your decision.

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.

In a nutshell, he is worried about all the things that every parents worries about for their child. Some children are born different. Some children become different as a result of accidents or disease (a friend's DD lost her lower limbs when they were amputated due to meningitis). Other children appear to live charmed, idyllic lives but are sad inside. It really isn't possible to point at any individual child and say "they will be happy" and point at another and say "they will suffer terribly". Becoming a parent is taking a huge, risky leap into guilt and uncertainty. All we can do is take the children we are given and try to help them lead fulfilled, happy lives - even if their lives are not conventional.

Yes your child might face all those problems, but as parents, it's part of your job to help them over come these obstacles in life. There are people with 4 limbs that have these problems too, they are not just limited to people with physical disabilities. Like I said before its only an arm and agree with pp that it sad how a life of a disabled baby is somehow viewed to have less value.

As someone who has this condition I would advise to terminate. I certainly wish my parents had. I resent them for knowing and carrying on with the pregnancy. My mum is a serious Catholic though so I'll never know how much of this choice was hers.

Of course everyone has a different experience but let me tell you about my life and then name change.

I spent months and years going to doctors to be measured and poked and pulled. As an adult my doctors still talk to me as though I'm slow despite the fact that I have a degree and a job. I was bullied or left out through school. I self harmed and my hips and covered in scars because ironically I couldn't cut up my arms like a ~normal person~. I went through horrid depression for years because I felt so different and frustrated and things were just hard. I still suffer tbh. Once it gets into my head it's hard to get out. I can't really tell people because it makes everyone uncomfortable. Everyone loves a cheery disabled person who perseveres in the face of life's challenges. No one wants to deal with an exhausted and sad invalid.

Yes, I have adapted and have my own way of doing things but I would rather not have had to. Everyday things are difficult and I get anxiety and panic attacks from the stress. Last time was because the prosthetic I was wearing became waterlogged on holiday and started to smell and there was nothing is could do about it.

I don't think anyone appreciates quite how hard life is. I am always in pain from wearing the prosthesis and I'm too self conscious to go without. I have seen one or two people walking around without but everyone stares, or worse, avoids looking.

I've had guys see me as a novelty conquest which made me paranoid about any romantic attention. This was especially hard as a teenager as you can imagine.

I dread summers and formal affairs because finding things with long sleeves is nearly impossible if I don't want to look frumpy.

What you have to consider is would you want a life like your child may have? Because yes it will be hard on you as parents, but you won't have to live with the limitations day in and out. You will get respite and you will be able to do other things and get on with life and not think about how to open a packet of crisps with one hand or chop up a fucking potato.

Your child may not go through any of this. They may go through worse. Nothing in life is guaranteed. I just think you should consider your baby's adult life because mummy's love isn't enough when you want friends and independence and a boyfriend but you can't even change your own sheets.

Exactly what Perspicacia said.

Oh my, Hoot, what a sad post.

Hoot, that was a very open and honest post.

I know that it is your individual decision to make but I do feel a bit saddened if it's true that 50% of people terminate under those circumstances.

My view is that there should be a place for people with disabilities in our society and that the world would be a worse place without them. The more positive role models there are out there and the more prejudice is challenged the better our world becomes. All those bad things bullying etc that your DH fears need to be challenged. Other people's prejudices shouldn't be a reason for a person with a disability not to exist. The haters will always be there they'll just bully someone else.

Have you seen The Last Leg with Alex Brooker and the very gorgeous Adam Hil?s? Another two people not being held back at all by missing parts of limbs and also really funny but informative on disability issues.

I've never had to make this decision for myself. My opinions are shaped by my work with people with various disabilities but I hope that if I were in your position I would be guided by the principle that all human life is worthwhile and valuable.

Hoot- that was a cross post and looks very patronising. You have real lived experience. It makes me very sad to think that you have struggled so much and don't seem to feel your life is worthwhile.

Hoot, your post is very sad.

OP I came on to encourage you not to terminate. DS1 was born with one hand and a sightly shortened forearm which wasn't picked up on scan. He is now almost 16 and is the most almost confident young man I have ever met. He talks openly about his hand, doesn't hide it - never has - he can do everything apart from the monkey bars at the park!
Yes he does change his own sheets, peel potatoes, ride a bike, play tennis etc. I have learnt a lot from his positive outlook. His friends only want to help him.
I know when he was born I was in turmoil wondering how he'd cope with school but here he is with only two days left at school and he's never had a problem.
Please contact Reach, they have Fab advice and we have met many children and adults who have the same condition, all are doing brilliantly.

Fuck. I am of the opinion that only you can decide whether to keep your appointment next Tuesday, and maybe, you won't know til you get there. Each person knows what they themselves can cope with. I could cope with a limb abnormality but not with spina bifida or a chromosonal abnormality for example.But whatever decision you come to, it must be your own. Hoot your post was very honest and heart-wrenching. I am sorry that you have had such a raw deal. There will, however, be others who do not feel that way. Having watched Noah Galloway and Amy Purdy recently on dwts, neither would have preferred death to losing arm/leg (war) or both legs at 18 (meningitis). Being born with an abnormality some, not all, adapt quickly as that is all they have known. Wishing you well OP whatever you decide and if you do choose to go ahead good luck with the rest of your pregnancy