Down syndrome diagnosis

[Violet29]

Hi everyone, I'm new to this and just seeking some support. I'm 21 weeks pregnant with my 1st baby, she is much wanted having been through fertility treatment and because we have previously had a miscarriage at 8 weeks. The 20 week US discovered the ventricles of our little girls brain were measuring too high and after an intense week of tests we have discovered our little one had Down syndrome. This has come as a massive shock as I am 29 and never really considered this as a possibility. I am lucky to have an incredibly supportive and upbeat partner and we are continuing with the pregnancy and have been very well supported at the hospital. I have had a fairly negative reaction from a minority of family members and think that really hasn't helped my mindset, I feel so down and so frightened for us and our baby. I feel so guilty for the doubts i am having and cant seem to stop feeling sorry for myself and jealous of others with their 'normal' children. Would love to hear from anyone who has children with Down syndrome and their experiences. I just don't know how I can come to terms with this and regain my previous excitement for this baby.

[Idefix]

Congratulations on your pregnancy op.

We were given a different diagnosis to you at my ds 20 week scan after years of fertility treatment. We also went ahead with the pregnancy and tbh until ds was born didn't regain the joy and excitement.

Once ds was born however the joy took over, despite not being 'perfect' in a medical sense he was to me. 17yrs later I am glad I knew before about what I might face, it helped me to feel prepared.

Wrt your family members there will be a shock factor to come to terms with and their fears for your well being.

There is a poem call welcome to Holland by a lady called Emily Kingsley that really gave me reassurance and a sense of not being alone in some of my feelings.

Be kind and gentle to yourself you sound like you will be a wonderful parent.

[AndNowItsSeven]

Congratulations on your pregnancy, try the special needs boards, posters are very supportive.
I have dc with autism so didn't know they were disabled while pregnant.

[Violet29]

Thankyou both, its so lovely to have a bit of encouragement and support. I will have a look on the special needs boards too, I'm sure once the initial shock wears off I will start feeling a bit better about things.

[Vanillagirl00]

Congratulations on your pregnancy, OP. I'm sorry that you've had what is understandably a shock, to process, amidst your good news.

Just passing and thought I'd mention this: a public page on Facebook by the parents of little toddler twins with Down Syndrome. Their videos always make me smile. For me (and I considered myself quite 'informed' on Down Syndrome)- it made me realise what full and happy lives people with the condition can lead. www.facebook.com/ollieandcameron/?fref=ts

I've no personal experience myself but have heard good things about the Down Syndrome Association for support.

Take care and best wishes with your little one xx

[KittyandTeal]

Congratulations on your pregnancy.

Allow yourself time to 'grieve' for the life you thought your baby would have, I think often that's what it is, an adjustment in accepting that your child's life will be different to what you expected (not worth less, just different) Try not to feel guilty about feeling sad, that's absolutely normal.

There are a few wonderful posters on here who have children with Down's syndrome, the one I've come across often and who seems very lovely is 'lucysmam' I think her name is. She's been very helpful with other posters and has pointed people in the directions of Facebook groups who support families with children with Down's syndrome.

Best of luck xx

[LBNM19]

I dont have a child with DS but i do have a little boy who is severely disabled. He cannot walk or sit up and needs help with breathing.

I was 21 when i had him and it never even crossed my mind i would have a child with a disability. The condtion he has is genetic.

He is honestly one of the best things to happen to me and even though our lifes have changed we love him very dearly.

There were of course times i thought why him? Why us? But with time you do learn to except it.

Speaking to familes in the same situation does help. Xx

[GirlWithAPearlNecklace]

Violet, I've replied to your other thread and sent you a PM.

[curliegirlie]

Congratulations Violet! My DD is 13 months old and has Down's Syndrome. She is a beautiful, happy, giggly, cheeky little girl and is doing so well. She started to crawl a few weeks ago and we are ridiculously proud of her! She has no heart or bowel problems, and other than a frequent snotty nose, has always been really healthy. I know some other kids with Down's who have needed heart surgery but have come out the other side and are doing brilliantly.

Like you, the diagnosis was a huge shock, but in my case, it was a few hours after my daughter was born (I'd had the nuchel test, but had been given a 1 in 1900 chance, so didn't give it a second thought). The consultant didn't break it to us particularly sensitively.

Personally I hate the Rome/Amsterdam poem, but love the Down's Syndrome Association. They are a real treasure trove of information, including contact details for local groups. Another great Facebook page is Don't be Sorry, about a lovely 4 year old called Oscar. Brilliant, uplifting and reassuring, but Oscar's Mum also talks about challenges/frustrations, so a good balance of stuff, not just rose-tinted . Congratulations again - it's a scary journey, but worth every second!

[franincisco]

Not DS, but I received a diagnosis at my 20 week scan when i was in my early 20's which was a huge shock. The pregnancy was pretty much anxiety fraught, I was afraid to look too far ahead etc. Some family members were very insensitive which was very hard as I assumed they would be my rock.

When she was born she was the most perfect thing to me and she just fitted in brilliantly. Some people had their stupid opinions but I learned to block them out. Life hasn't always been very smooth but I really wouldn't change her for the world.

Congratulations on your baby OP, you will get through this

Curlie your dd is such a cutie

[Nikki2ol6]

Hi, my friend has a baby girl with Down's syndrome and she's a beautiful happy fun little girl. Ok so I went through something similar at our 20 week scan they said our baby's heart was not normal and we had to see a specialist and they then said yes the vessels are in the wrong places there is a hole here and a thin vessel over there. So as we were trying to deal with that they also said we have a 1in5 chance of a chromosome abnormality. We had the amnio and our first set of results were normal, our second set took 15 days! 15 days of no sleep and full of stress, but we got the all clear. But still our baby has a lot wrong with his heart and I keep seeing friends on Facebook with their new baby's all snug at home and I know that won't be me and my baby and I do feel very upset he's different and it won't be a normal birth and aftercare. We too decided we would continue the pregnancy and I'm now 27 weeks but a lot of people were saying it's not fair on him to need a lot of operations then he may never run around like a normal child. And it's all been so awful

[TheForeignOffice]

I just came on to suggest the (already suggested) Don't Be Sorry blog on facebook.

Best of luck with your preparations OP and also you Nikki