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Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Original poster

Amnio 1in 3 risk of Downs/Turners

39 replies

loughglynn · 06/12/2009 22:04

Hi there. I am all new to this but I needed to talk to someone. I am 41 and expecting my second child in June 2010. I had a 12 week nuchal scan and the fluid at the back of the baby's head measured 7.7mm. I had my first child in 2007 and at the 20 week scan they found markers which was checked out in London and they found that my baby had a whole in his heart and kidney dialation. They also gave me a risk of 1 in 150 of Downs. I didn't have an amnio then and my child was fine, the hole had cleared up and within two years the kidneys was fine. I didn't think I could go through the agony again but here we are.
This time is far worse and we are going for the amnio on Thursday after another scan. I have been so upset for the last three weeks waiting and wondering. They couldn't do the CVS at 12 weeks as it was too risky and my womb was tilted backwards. The risk is 1 in 3 of Downs with 50% of this Turners but who knows what they will find. I am so scared.I had been reading Peanutheads threads which at least made me feel so alone in this. Would like to hear similar experiences.

OP posts:

thesecondcoming · 15/12/2009 21:31

This reply has been deleted

Message withdrawn at poster's request.

SleighGirl · 15/12/2009 21:36

sorry to read your news, I hope you get the support you need whilst you come to terms with it all.

adriennemole · 15/12/2009 22:31

Hello again, I'm so sorry that you're results were not what you had hoped for . I remember well the shock and anguish at recieving the news about my own unborn baby and the thoughts and feelings that you must be experiencing.
It is early days yet and you need time to grieve (a perfectly natural reaction even if you decide to continue your pregnancy) but when you're ready, and if you decide to continue please come over to SN there is a wealth of support and information there.

If you want to talk please let me know I'd be more than happy to share my experience all I can say is that I am in a totally different place than I was then, the fear has vanished and my family complete in every way possible. Take care

AngryFromManchester · 16/12/2009 10:29

loughglynn, this must be a terribke shock for you, I cannot imagine. My daughter does not have down syndrome but she has moderate to severe learning difficulties and tbh she is a pleasure. The early days were hard in that I had to come to terms wit her diagnosis (which unluckily fell at the same time my poor sister died) but she is 10 years old now and our life is just normal. She attends a special school and honestly this is not the worst thing in the world but I have been in your place where special school filled me with horror, but it actually quite fantastic I think the easiest way to cope with it is to to take every day at a time and try not to look too far into the future. When you get there, to the future, your fear were/are never as bad as you thought they were.

Last but not least though, enjoy your baby. He/she is who he/she is and you will get the same joyfrom them as you would a 'normal' a baby, because when you hold your baby in your arms for the first time this is what they are. They are just a baby

Do go over to sn if you need support though. I don't go there much anymore because I don't need to (oh how fab is it to say that?!) but when she was younger I found it invaluable. Look after yourself love xx

GooseyLoosey · 16/12/2009 13:10

Sorry to read your news too. Thinking of you and your family. I have no fab advice for you like others here do but be gentle with yourself while you come to terms with this and take as much support from others as you need.

Original poster

loughglynn · 16/12/2009 22:03

Hi adriennemole. Thank you for your post and I would be interested in talking to you about your DS. How do I go about this? Today has been a very tough day and as I only slept three hours last night I am exhausted. I don't know where to start?

OP posts:

Original poster

loughglynn · 16/12/2009 22:12

Hi Midori - I would like to get more information from you too if possible about where to start on researching Downs Syndrome so I am a little more prepared for June 2010. Which websites did you find the most useful at the beginning and should I try and find mums in my area that have a child with Downs? Also is it best for me to move over to the Special needs section? I would also love to hear from anyone expecting a child with Downs around the same time as me so we could perhaps get through this together.

Thanks for all your replies ladies and your words of comfort - it means a lot in these worrying weeks and months ahead.

OP posts:

adriennemole · 16/12/2009 23:16

Loughglynn, You have so much going through your head right now that your sleep is bound to suffer.
My advice is to (try) to clear your head for now, eat and rest as much as possible and seek comfort from your friends and family worry and grief can be exhausting, take your time.

It will get better, once I was over the initial shock I threw myself in to finding out as much as possible about DS by contacting the down's syndrome association who put me in touch with local groups and parent's of children with down's.

I think the idea of finding someone else who is also pregnant is a wonderful idea. I didn't manage to find much support aimed at parents who had found out antenatally and it could be lonely sometimes so if I can help in anyway I'd be more than happy. I'll get back to you about contacting.

There's a couple of pictures of DS on my profile he's a wonderful, happy and very easy little boy (so far!) the reality is so different to what I had imagined when pregnant it just takes a while to get your head around it all.

Original poster

loughglynn · 18/12/2009 14:13

Adriennemole- I saw the pictures of your three children and they look gorgeous and happy.

OP posts:

Cantdothisagain · 18/12/2009 20:09

Hi loughglynn

Nothing to add as have no experience of this... except that I am sorry you have had this news, and I wish you strength. Take care.

largevirginbirthandtonic · 18/12/2009 20:20

I am so sorry Lough You must be in shock.

I can't really help with the DS diagnosis but have a daughter with Turner's Syndrome.

She has lot's of issues but tbh we barely notice. She is a confident and happy girl.

She is #3 of 7 children.

I wish you all the strength in the world. You will get through this even though right now you feel like you can't.

Much love to you and ask me anything you like btw. I would be happy to help if i can.

noshouting · 18/12/2009 23:20

Hi Loughglynn
I have just come across this thread and remembered this blog

downsdad.wordpress.com/

I read it a while ago and was impressed by the way it tells the story of Jacob who has Downs syndrome.

Hugs to you.

AngryFromManchester · 22/12/2009 11:15

How are you lough? I hope you are keeping well and have got over the intiial shock of this all. It will all be okay you know

Adriennemole, your children are gorgeous

eidsvold · 22/12/2009 11:28

I have a 7 yo daughter who happens to have ds ( I also have two other dds) We were told prior to her birth that is she was born without down syndrome it would be very rare. We declined an amnio BUT we knew she had a heart defect that was incredibly common amongst children with down syndrome. Both dh and I had very positive experiences in knowing families who happen to have a family member with down syndrome.

Our daughter is 7 - as I said. She attends a mainstream school and is a delight. She was 3 when she started walking - or should that be running and she hasn't stopped since. Her language has improved out of sight - I believe due to her being in mainstream kindergarten and school. The kids love her - she is truly included in her class and is a class member as much as everyone else is.

SHe also attends a mainstream dancing school and recently performed in her first concert.

There are tough times - the hardest times - dealing with the ignorance that is prevalent within society to people who are different. Watching her undergo two open heart surgeries - weighing 8lbs and at 8 weeks old was pretty tough too. I was living in the UK with just dh and his family for support. My long term friends and all my family were in Australia. I know that when dd1 was born - we did not stop or throw away our dreams - we just dreamed new dreams for her.

If you search for me - you will see reams I have written about her.

my daughter aged 1 She was one of 3 people featured in the Annual Report for the Down syndrome association in 2002/3. Photos taken at that photo shoot regularly appear in the BBC website.

I know of young people with down syndrome who have managed to live relatively independently, they have jobs, they marry and some of them have a much richer social life than I have.

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