My baby has Downs Syndrome

[jools70]

Just found out this afternoon that our baby has downs we are devastated, do not know what to say. One min I am ok the next crying my eyes out.

We had IVF at 39 we were expecting twins then we lost one at 9 weeks now have this as a second blow.

I desperately want a baby but I am so torn

my nephew has downs. apart from it taking him longer than average to reach milestones, he's a wee boy like any other and there's a brilliant chance he'll attend mainstream school with his big sister.

educate yourselves as much as possible and you might surprise yourself.

i totally agree about it being an outdated view that siblings are lumbered with the care of someone with DS. another member of my family worked in supported accomodation for adults with DS and the residents lived reasonably independent lives.

My DD does not have DS but she has learning difficulties that are more pronounced than they would be in most people with DS. If I had been told when I was pregnant with her that it would be this way, would I have kept her? I can't say for sure. Probably, despite the fact that I was only 16 when she was born. But that's what I would do. This time round, and the last few times I've been pregnant, my DP and I refused the tests, as after having 3 dc, 2 of whom have SN, and losing a baby at 19+5 in 2008, as well as numerous other mc's, it wouldn't change the fact that we would continue with the pregnancy no matter what. Our personal view is that one more dc with SN won't tip the boat if having 2 out of 3 with SN hasn't already done so. It's not easy, but with the support of the wonderful ladies on the SN board, I cope. I wish you luck in whatever you chose to do.

Feel so emotional reading this thread, and feeling for your situation Jools.

I don't have any direct experience of a child with DS so cannot add anything to the examples already shared. It strikes me that it's so cruel to have to make a decision when you cannot hope to yet have all the experience and insight you need to know what's right for your situation.

All I will say is that no child comes with a guarantee; there are always worries and what ifs etc. My nephew is severely autistic and, now in his mid 20s, still fully dependent on his parents. He wasn't diagnosed until he was 2, my sister was already heavily pregnant with their 3rd child. When she fell accidently pregnant for a 4th time, she chose to have a termination as she knew she couldn't give enough to her 3 existing children.

I wish you all the very best in whatever you choose to do. Either route requires much bravery. x

How are you feeling this morning Jools?

Hi jools
Just to say, try and meet some ds people and their parents if ypu can as this will give ypu a realistic feel for what's involved. My dp and I are ttc but are high risk and we do some voluntary work with ds, helping them write songs and perform as a band. I still don ' t know what I wld decide if we faced yr decision but I do think we' d have a good basis to decide from. :-)

Jools, very sorry to hear. Whatever you decide will be ok. If it was me I'd probably terminate the pregnancy but I haven't had IVF so I am in a different place.

My perspective is slightly different I think because the only down person I know is my BIL's brother. BIL's parents are getting a bit older and their downs DS (aged around 25) still lives with them. BIL knows that he will have to care for his brother once his parents are no longer up to it and I think this is a major concern to both BIL and SIL.

But as others say even if a baby doesn't have downs still no guarentee of a healthy baby, of my 4 friends with SN children all diagnosed well after birth.

Hi Jools - hope you managed to get some sleep last night

Just wanted to check in, and add my voice of support to all the others!

Hopefully the midwife visit will go well, and she will be of some support.

Abi
x

Hi Jools

I'm sorry to hear your news. I have no personla experienceof DS other than knowing a family whose DS has DS, but I do know how hugely he is loved by them and by the wider community they are involved with. And just how integral he is to the family. Would it be worth meeting some familes affected by Ds to get a closer idea of what the impact might mean for you?

Some poepl have commented that they didn't feel it fair on siblings to bring a child into the world with DS, in terms of the siblings having to be responsible for them when they are older.

My older sister is physically very well and did brilliantly at school. She now has severe and enduring MH problems which means she cannot work/function independently. I know I will be responsible for her when my parents have gone. You can't anticipate everything in life.

I wish you and your family all the best.

Hi Jools,

There is a little boy in my son's class at school. He has Downs Syndrome.

This little boy is fully integrated into mainstream school. He is non verbal, so the teacher has taught all the children to sign makaton.

This is just a little anecdote to ease your heart.

Remember, that nobody will judge you on whichever decision you make in the best interests of your family.

Wishing you all the best in the coming months.
x

pad's post has just tipped me over into tears...

in a positive warm way I mean.

Hi jollster,
Sorry late I know.

Did you carry on with the pregnancy?
I have a child with Downs syndrome (didn't know until she was born as I didnt have any tests) but I would like to help with advice any way I can if you did.

Hi

My very best and oldest friend had a boy with downs (he's 2 now).

Downs was undiagnosed so it was a surprise as she had the nucal and diagnostic bloods.

However he was 2 months premature with a bowl and heart problems which have both required surgery. Both were easily repaired and he is now very fit despite this early delivery and issues.

He is now one very bright happy little boy. In terms of development he is almost bang on despite prematurity.

Whilst its still early days for them, it looks like he isn't very severely affected by the downs. Apparently babies can be affected to different degrees so even a downs diagnosis before birth isn't a complete indicator of how well that child will do.

My friend said at first she would have terminated if she had know and she would do so again.

Well she fell pregnant again last year and had a girl in June. However this time she had cvs as early as possible. The cvs came up with a chromosome 1 defect and they were given a very bleak outlook of severe disabilities.

My friend rang me at the time and said she wanted to terminate. However 2 days later she changed her mind.

Little girl was born and it looks like the bleak prognosis was incorrect and her girl is doing great. Possibility of learning difficulties but nothing like they were promised.

Don't misunderstand me, Jools, I am completely pro-choice (had all antenatal tests with DD) and can also understand why you would want to terminate and how you feel overwhelmed by it all. But worth giving some thoughts to and asking those with the experience how it affects every day life (if at all).

If you wonder about levels of intelligence, well other than my friend, I lived on the French border of Germany and Luxembourg for a fe years when younger and in my village was a 16 year old girl with downs.
She spoke fluent French and German and some English. And I do mean gramatically correct and could write in all 3 too. She was a bright girl and really lovely. Liked MTV and popstars and occassionally still played with dolls.

I just wanted to share my only to experiences so far with downs.

I hope you find strength to make a decision which can help you move forward.

x

Jools, this is so heartbreaking. Unfortunately, I cannot offer any advice. I am sending you hugs and offering my prayers! Keep your chin up, whatever decision you and DP make!