Expecting a baby with a major physical/mental disability

[WantedTheOther]

We're thrilled to be expecting after 8 years, but I'm reaching the end of my maternal bearings (44 - miracle we conceived really), and am giving up work to stay home with baby.

Can't say with age that I'm terribly shocked by news, we found out 6 weeks ago and DH and I haven't hardly discussed it beyond DH: 'I guess you'll be staying home?' Me: 'Yes.' DH: 'Best probably. And a good special school.'

I don't really know where to start. Docs have been bland if not unsupportive. Where do we go from here? I'm not sad about it particularly, just want to tackle it head-on and give baby best life they can have.

going by your post you are already giving your baby the bast start by your Love.
Imo men find the whole issue a bit hard, hopefuly once baby comes he will fall in love.
congratulations by the way, 8 years is a long time to wait.

Agree with 2 shoes

How much do you know about what your baby's disabilities will be?

Have the doctors been able to be specific about the disability? Is it something named? It might help others with experience of the same or similar to give specific advice/experiences?

I know with my own son the 'disability' wasn't anywhere near as life limiting for myself or my DS as I probably would have been led to believe if doctors had discovered it when I was pregnant.

Congratulations

You will find the special needs community a supportive place on the whole.

My son attends a lovely SLD school- it's is wonderful and I feel honoured to have it in my life (if that doesn't sound too cheesy). Severe disability has altered my life - it's harder, but it's more rewarding and more meaningful than it was before.

Your best source of support will be other parents. Are you able to say vaguely where you are in the country? Maybe we could hook you up with someone local to you.

And remember - doctors do not have crystal balls. They often dish out the worst case scenario. I suppose that can sometimes be helpful as you end up pleasantly surprised.

Congratulations! And good luck, you both sound very pragmatic about things which is definitely the easiest way to cope. Blue bump or pink, and when are you due?

congratulations, 8 years is a long time. Totally agree with saintlys last sentence, docs definitely don't have a crystal ball, it's very difficult to predict what difficulties any child will have and to what severity. Beware the dangers of consulting Dr google, very high chance of unnecessarily scaring yourself stupid, I say that from experience When is your baby due?

totally agree with the 'crystal ball' theory. dd2 is apparently not supposed to walking or talking, and does both with reasonable competence. that's not to say that they won't be right about whatever they have told you, but only time will tell.

congratulations on your pg - wishing you well for the birth! lots of advice and knowledge on here if and when you need it! x

Congratulations on your pregnancy!!

I can sympathise with your situation, it took us a long time to get pregnant and once we did we discovered our baby has down syndrome; It was a huge shock at first, but 4 months on I can honestly say she is the best thing that has ever happened to me & she makes me break into a huge smile every time I look at her!

There will be tough times, but the highs more than make up for it.

Finally, I would echo what the others have said about this being a great area for support on the tougher days!

Firstly congratulations!

My DD was born with a physical diability.

Helpful things for me were joing a charity for people/parents of children with the condition. They provide info and you can meet other families in similar situations.

Can you ask if the Consultant can put you in touch with another family. I've been asked to do this 3 times now and hope it has helped the pregnant mums.

Ask questions about future care, research, don't miss out on care. It was only discovered when DD was 2 that she hadn't been referred her to the community paediatrician who in turn refers to OT, physio.

Get organised. Mum to a disabled child is like being a PA. Appoints to chase and co ordinate - get a wall chart/ calendar/ book to note things in.

Practically - learn to drive if you can't, make sure you have access to a car in the daytime etc.

Best wishes

WantedTheOther, welcome to the SN board, and congratulations on your pregnancy. I can only echo the sentiments of the other posters on here.

During my pregnancy with DD1, I had always said that if I was ever going to have a child with a disability (which of course I wasn't, because it always happens to someone else, right?), I would want to know in advance so that my child could get the best care. Funnily, the two things I felt very anxious about were a) incompetent cervix, because ladies only tend to find out about it when it is too late and b) diaphragmatic hernia, because again, most cases are only diagnosed after birth, and then the situation is critical. Paradoxically, because I didn't want an amnio or cvs, I also refused the triple test (Nuchal fold wasn't around then anyway).

I will never know if DD1 would have flagged high on the triple test. She had a slight 'down syndrome look' which a midwife was concerned with, but the Senior Reg dismissed. 2.9 years later, she wasn't so far from the mark after all. DD1 has an as-yet unidentified genetic syndrome which messed with her brain formation.

Honestly, try to enjoy every minute. Don't let the disability rob you of the joy. Perhaps see if you can get onto a Makaton Course. If you learn now, you can use Makaton from day one, and it will be natural for your child.