Down syndrome diagnosis

(6 Posts)
Violet29 Thu 22-Sep-16 09:45:43

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 Thu 22-Sep-16 16:02:00

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 Thu 22-Sep-16 16:08:19

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 Thu 22-Sep-16 18:06:12

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 Thu 22-Sep-16 19:32:40

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 Fri 23-Sep-16 21:07:59

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

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