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AIBU to be frightened of my child having a disability that runs in the family

(128 Posts)
daffodilsoverthebridge Sun 20-Mar-16 07:20:05

Opinion seems to be divided as to whether or not it is genetic and there's no prenatal screening.

I am now in the awful position where I want a baby but am petrified of passing it down. W

VimFuego101 Sun 20-Mar-16 07:22:39

If it were me it would depend how severe the disability is and what the odds were of passing it on.

daffodilsoverthebridge Sun 20-Mar-16 07:31:44

I don't know the answer of either of those things, neither do scientists.

BertrandRussell Sun 20-Mar-16 07:39:21

How badly are people with this particular disability affected? What % babies have it?

daffodilsoverthebridge Sun 20-Mar-16 07:43:33

About one in 68 births apparently but it's hard to say.

honkinghaddock Sun 20-Mar-16 07:46:37

Is it autism?

Janecc Sun 20-Mar-16 07:47:12

Hi daffodils. I suppose the question could be to ask yourself is whether you (and the father) have the personality and physical strength to look after a potentially severely disabled child for the rest of your lives. What I am saying is we can't live our life with the ifs buts and maybes. You don't have the answer and neither do the doctors. So if I were to turn it on its head and say: do you Want to deprive yourselves of what many would consider the most wonderful experience of their lives? And if the answer is no. Then maybe consider either take the risk if you feel able or consider adopting a beautiful child, who needs lovely mummies and daddies. If you decide to bring a child into the world and they are disabled, you will have made a conscious decision because you can handle it, odds on they will be much loved and that is something sadly not all children have.

daffodilsoverthebridge Sun 20-Mar-16 07:48:40

Thank you Jane, unfortunately love just isn't enough, sometimes xx

noisytoys Sun 20-Mar-16 07:51:45

My daughter has quite severe autism. So does my brother and my nephew (son of another brother) is undergoing diagnosis. It never occurred to me that there was a genetic link. And as I don't have autism and neither does the parents of my nephew, it wouldn't have occurred to us that we could be carriers of the gene. I have been told by several healthcare professionals that my children have a 1 in 4 chance of autism. My other daughter doesn't have it. As much as I wouldn't wish it on anyone and would take it away from my youngest in a heartbeat if I could, I wouldn't not have her just because of her disability.

ShutUpSirius Sun 20-Mar-16 07:53:18

Having a child with or without a disability is a wonderful experience.

My first has a genetic disability. She is in pain a lot but I don't ever regret having her. She has a quality of life. It wasn't diagnosed until she was 7. It's life long and will seriously impact her as she ages.

We don't know if my second child will have a similar issue. Different dads but I carry the gene.

Janecc Sun 20-Mar-16 07:53:21

Sometimes love is all we need. No one has the right to judge you for your choices. Thing is I don't know what to say especially because I imagine you're reluctant to divulge the disability for fear of being judged. I've seen some fierce posts. I'm not here to do that. Good luck whatever you decide xx

honkinghaddock Sun 20-Mar-16 07:58:47

I have a child with severe autism and associated difficulties. It's hard work but I have never regretted having him and his life is mainly a happy one.

curren Sun 20-Mar-16 08:13:47

OP I am sorry you are dealing with this.

There is no right answer. I suffered with mental illness in my teens. When I had my dd at 21 I knew I could not have handled a disabled child. It was my biggest fear. Mentally I wasn't strong enough and me and dh had decided an abortion was the right thing is something was wrong.

Maybe I was wrong, maybe I could have coped. But in my heart I felt I couldn't.

Roll on 7 years later when I had ds. We didn't have the extra tests for Down's syndrome. Because there would have been no way I would have had an abortion. Yes we would have been more prepared if we had known. But i wasn't going to take the small risk of miscarriage to have fluid tested. An abortion wasn't an option. I was in a completely different place.

Dd was unexpected.

But before we started trying for ds. Me and dh did undergo some testing as my family has a large amount of a certain genetic disease. I didn't carry the gene neither did he. I never came up with an answer of what I would do if we were both carriers.

It's not an easy decision. And how you feel now, may be completely different to how you feel in a few years.

Of course anything could happen and dd could have become disabled at birth or since then. Or been born with something we didn't see coming or the genetic disease. In which case of course I would love and care for her. But at the time I was pregnant with her it wasn't the choice I would have made.

I have the upmost respect of people who care for disabled children but believe whatever decision anyone makes, is right for them at that time.

daffodilsoverthebridge Sun 20-Mar-16 08:15:04

The problem is, that only works if it is something you can test for: sometimes it isn't.

Msqueen33 Sun 20-Mar-16 08:17:30

I think it depends on the disability and the likelihood of it being passed down. I have three kids. The younger two have autism. No one else in the family is autistic. Had I known I wouldn't have had my youngest. Because one is hard work enough. How does your partner feel if there is one?

daffodilsoverthebridge Sun 20-Mar-16 08:18:32

Thank you for being honest Msqueen, it's so hard isn't it?

fanjoforthemammaries7850 Sun 20-Mar-16 08:21:19

The 1 in 68 figure for autism means that anyone having a child does have to accept it might be a possibility.

If it runs in family then yes you have to accept it might be higher risk.

I think therefore you'd need to be sure you could handle having a child with autism before proceeding, which is very hard to know. I wouldn't have thought I could before having DD but I do and don't regret having her.

Your post reads like you wish there was prenatal screening and if so you would abort, in which case I would seriously consider adoption if I were you.

Sorry if that sounds harsh.

fanjoforthemammaries7850 Sun 20-Mar-16 08:22:15

Sorry for mentioning the disability but the 1 in 68 was pretty obvious

FantasticBeast Sun 20-Mar-16 08:23:03

My eldest son has autism. I was 19 when I had him. But he has taught me so much, and I love him unconditionally. Yes, its hard, yes, some days are a struggle, and now we're approaching school, I'm starting to have to fight for him with every appointment that comes along. Not having him was not something I ever considered, & neither was the idea of my child having autism but when you're faced with these sorts of things you do what you have to. IMHO, love, support, understanding IS enough. But thats just what I feel. It is all very frightening and can be hard to process, but he's my little boy, I love him so much, I wouldn't change him for the world! I hope you come to some kind of decision and I wish you all the best! flowers

daffodilsoverthebridge Sun 20-Mar-16 08:23:23

It doesn't sound harsh except that adoption is the opposite of ensuring a child you have doesn't have a disability. Plus there are other issues with that, which I won't go into, but it's not as simple as 'ooh I will just adopt.'

curren Sun 20-Mar-16 08:23:50

The problem is, that only works if it is something you can test for: sometimes it isn't.

Yes it is. As I said I don't know what I would do if me and dh had a high chance of it. I really don't.

What I am saying is you can only make what you feel is the right decision for you now. There is no easy answer and I am so sorry you are going through this thanks

I wish I had an answer for you.

FantasticBeast Sun 20-Mar-16 08:24:35

Also sorry if it's not autism you're referring to, but as FanjofortheMammaries said, the figure was fairly telling

fanjoforthemammaries7850 Sun 20-Mar-16 08:24:48

It's not really, as you can adopt a child from a different genetic lineage. Obviously adoption is a big big deal and not entered into lightly, goes without saying.

fanjoforthemammaries7850 Sun 20-Mar-16 08:25:49

And could bring its own issues, of course.

fanjoforthemammaries7850 Sun 20-Mar-16 08:26:53

I understand it's hard. Just learn as much as you can and make the best decision you can make its all we can do.

Children with autism are also rewarding and lovable, although there can be hard hard issues too.

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