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In shock - baby born with Down's syndrome completely unexpectedly - please help

141 replies

mountaingoat · 31/10/2007 23:42

Three weeks ago I gave birth to a beautiful baby girl, my second child. For 3 hours we were elated. Then we were told that she had some facial abnormalities which would need to be looked at further. From the delivery suite we were taken back to the post natal ward and put in a private room, at which point alarm bells started ringing. Shortly after that, a crowd of doctors came into the room and told us that our daughter has Down's syndrome. At that point it felt as though the sky had fallen in. I am 33; we have one beautiful, bright, perfect son (aged 3), and it had never entered our heads (very arrogantly I now realise) that we might have a child who was anything other than perfect too. We had the nuchal translucency scan at 12 weeks and were given a 1 in 5600 risk. We had (wrongly) treated that result as a no risk result, and hadn't thought again about DS. I cried for two days, and I have never felt such pain and sadness in my life. I am ashamed to say that I knew nothing about Down's Syndrome other than that it was a disability. I am now slowly coming to terms with the situation. It is made easier by the fact that our daughter is a delightful, cute, darling baby, who I love just as much as my DS. We have also had tremendous support from the NHS (which, I am also ashamed to say, I have never had a good word for in the past)I would love to hear from anyone else who this happened to - I have read lots from people who knew that their baby had Down's before he/she was born, or where people knew they were at high risk. We were low risk and had no idea at all and I think coping with the shock has probably been the hardest thing. Also, whilst people keep saying very positive things about Down's I feel so so sad and I don't know how to cope with that. Please help.

OP posts:
theheadgirl · 03/11/2007 09:25

SoFlo - Welcome to mumsnet, congratulations to you too on your little one. I hope things are going well and that, along with Mountaingoat, you'll continue to post. And yes please, post some photos!!

Graciefer · 05/11/2007 17:46

bumping for positive to read

FioFio · 05/11/2007 17:56

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Graciefer · 05/11/2007 18:47

hehehe yeah mind you Jack is a piece of cake really, he has been sleeping through for the last 3/4 weeks till 9 am none the less too

FioFio · 05/11/2007 19:45

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cbf · 10/11/2007 11:17

I just wanted to add my congratulations and give you the link to the Downs UK Listserve. listserv.down-syndrome.net/archives/ds-uk.html My situation is slightly different (I'm 19 wks preg.) but the folks at this listserve have been an invaluable source support and it's been a good way to meet other local parents. Even when I feel too tired and overwhelmed to post, just looking at the discussions help so much.

A good example was this morning - I've been having a rough week. After finally plucking up the courage to start talking to friends about the baby, I emailed an old friend who had a child with learning disabilities thinking this would be the most supportive place to start. WRONG - she sent this horrible email saying I should think hard about continuing the pregnancy as it will have such a big impact on my 2 yr old's life and he'll have to "responsible for" his sib. after we're gone since s/he will "never be entirely an adult". This after similar sentiments stated by most of the midwives who have been "caring" for me. Anyway, I went onto the list this morning hoping for some inspiration only to find a post linking to a new film that sounds wonderful www.thechildking.com/index.html. It's about a boy with DS who takes his disillusioned little brother to North Pole to find Santa. Just what I needed. It's so refreshing to see images of people with DS supporting their siblings instead of the other way around - we really need more of this sort of story, people are so stuck in old stereotypes. Anyway, sorry for the digression, you know how those pregnancy hormones can be, but do check out this list if you haven't already, it really is a great place to meet others who understand what you're going through.

Blu · 10/11/2007 14:43

cbf - Congratulations on your pregnancy.

really sorry you have had some hard times...I am surprised your mws haven't been more 'led by clients feelings' and supportive.

I have no experience as the parent of a child with DS...but I do work in a building where an office upstairs houses a company run by adults with DS, suppported by an 'NT' adult. They run workshops and facilitate discussions, and I am sure many of them live independently. They certainly travel in by tube independently, they have coffee breaks chatting with other professionals in the building and take a normal part in daily working life.

I think some ideas of life with DS are very very outdated. In former times, people with DS were often institutionalised and given unchallenging repetitive tasks. Now there is so much more awareness of different learning approaches that can help people with different abilities achieve their full potential - which is more than was thought some generations ago.

Anyway - sorry, no personal experience, but didn't want your post to be unanswered.

cbf · 10/11/2007 15:41

Thanks for your reply Blu - this is just the sort of personal experience that really helps cheer me up. I think you're right, though - I don't want to offend anyone, but it seems as though the sad thing is that many people with DS who are in their 40s or even 30s weren't given the same opportunities as younger people today and so never had the chance to develop the skills for independent living. But it does seem like people in their 20s are doing things that were just not thought possible 40 years ago, when children with Downs were still thought of as "uneducatable".

I too was surprised by some of the midwives and am in the process of trying to find out about transfering hospitals to one that is more enlightened.

Thanks again for your post - even little anecdotes like this help a lot.

moondog · 10/11/2007 17:29

Just to reiterate; I know scores of people with DS who lead completely normal alives.As you say,times have changed because attitudes have changed.
Best wishes to you too CF. XX

ems7 · 13/11/2007 20:40

Hi

I don't post here very often (always seem to run out of time!) but couldn't not reply to you.

I have a DD who has Down syndrome after a low risk in pregnancy. She is now 2 and half and a total sweetie.

When we first recieved the diagnosis I went into shock and didn't really know how to handle the situation. There certinly was a mourning period for the baby I thought I was having but I have since realised that my DD is everything that I wanted just in a slightly different package.

You need to give yourself time, allow yourself to feel sad and talk through those emotions with people.

Please have a look at my DD's website www.hallsplace.co.uk or feel free to email me on elhall @ hotmail.co.uk - minus the spaces.

Emma

nobodyshome · 13/11/2007 22:23

a daughter is special regardless of anything. don't say she is not perfect because i bet she is! give her a hug from me and your son too.x

sibella43 · 19/11/2007 20:26

I would have posted earlier but I have not logged on for some time. I hope you are getting on OK. My DD has Down's. She has an unaffected twin. My NS showed a high risk and a further scan revealed serious heart abnormalites. I didn't consider not going ahead but I was very afraid. (I also have a daughter who is 17 months older). But today I have a dd who will be 6 on Thursday and is thriving in mainstream school with her twin. I love all my children dearly but every time I cuddle her or kiss her goodnight I feel myself infusing her with my love and her family's love. My experience is that the connection that you have with a child like this is quite extraordinary and calls up in you reserves that you will find in yourself.

Mountaingoat, please don't hesitate to be in touch if you need more support.

The article some of you mentioned on this thread was published to celebrate a significant Mencap anniversary. (I think) It was published in The Times on 13/11/06 and was written by Simon Barnes. It is wonderfully written.

flooplowder · 19/11/2007 21:09

Congratulations on the birth of your daughter, I am sorry that it has taken me a while to find your post.
I would only like to add, allow your self to grieve, not just now but at any time. I have gone through the grieving in the past and thought it was finished, but just lately the grieving has started to happen again, it is not something I am ashamed of, I think you need to grieve every now and then. This may seem negative but, it is only for a short period of time ... I am not very good expressing myself and I hope you get what I am saying.

workingmumandstudent · 24/11/2009 19:15

Hello Mountaingoat. I have read you post and those of support on here, I hope you are getting this much positive support in RL. I hope that things have settled down at home. I bet your Little baby girl is becomming a full on member of the family by now. I am so pleased you are having support from the NHS, that makes for a positive future. I work with families who have children with DS and from my experience the more you can embrace and nurture you child the quicker they meet their milestones etc. I have parnets who were in similar positions to you, who are now happy people with complete families. They have had the dark times but the ones who have taken all support on offer (portage etc etc) are flourishing. You baby girls personailty is devoloping so im sure you are bonding more and more with her xxx

FabIsNotFab · 24/11/2009 19:45

This thread is 2 years old.

workingmumandstudent · 24/11/2009 19:48

So it is, my good im so stupid sometimes

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