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Original poster

1:5 risk of Down's given...hand holding and advice/experience needed,please

101 replies

AngryBeaver · 21/06/2012 09:00

I had a thread the other day after I had a call from the midwife saying she was concerned about a few things on the scan. Nuchal fold at 3.4mm and no nasal bone present. I had bloods done and just got the results. 1:5 chance. I am in shock. I had convinced myself after reading loads of positive similar stories,that it would be ok.
The mdwf is sorting an amnio out tomorrow morning (I am not in UK,it is night time here) I have to travel 3 hours to have the amnio done.
I just feel this is not going to end well.

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justaboutisnowakiwi · 28/06/2012 03:46

This reply has been deleted

Message withdrawn at poster's request.

Original poster
AngryBeaver · 28/06/2012 05:45

I don't think there's much more to say really.Well nothing that hasn't already been said. The immediate reason is because of the other children. Then the fact that we are own our own on the other side of the world,away from family and friends. Then further down the track,dh and I want to enjoy our freedom again,maybe as Grandparents. We don't feel we would want to still be wholly resposible for a "child" in our 60's +.

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justaboutisnowakiwi · 28/06/2012 05:51

This reply has been deleted

Message withdrawn at poster's request.

Original poster
AngryBeaver · 28/06/2012 06:12

ok x

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Original poster
AngryBeaver · 28/06/2012 06:22

Sorry had to cut that short.Just to add. I am friendly with a family with a boy who has Downs. He is a great lad and his family worship him. I went to his 18th and the place was rammed with friends. He was the apple of his Dad's eye.
But,his Dad died last year and his Mum is ill. She can't look after him anymore and that duty has fallen to the eldest son and his wife. They have 2 young children of their own.
I just couldn't do that to my kids somewhere down the line. I wouldn't want them to have to carry my burden...and although this boy's big brother has stepped up to the plate and no matter how much they adore him,I know it is a burden for them.

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PosieParker · 28/06/2012 15:32

I remember the wait, it's awful isn't it. I got really 'positive' in my decisions and would have terminated if it was bad news, no question. You don't have to justify your decision to us or anyone else. You may want not to tell people as many may think this is an opportunity to judge you or to try and change your mind. It is very personal and not really for debate, whatever you decide.

Take Care and I hope it is good news. xxx

PrettyFlyForAWifi · 28/06/2012 17:58

Agree completely with Posie. The decision you make will be the right decision for you and your family. Thinking of you.

mummytime · 28/06/2012 18:19

I just want to say that if you were in the UK (and for anyone else out there who is worried) I know an 18 year old boy with DS. He is lovely and is perfectly able to live a life independent of his parents, he does need some support, but leads a good independent (ish life).

But you do have to make the right decision for you and your family, and your circumstances.

greenblue · 28/06/2012 18:21

My darling wonderful brother has Downs, if/ when anything happens to my parents I will proudly take care of him (if he needs me to, he is working towards some kind of independence as do many people with Downs these days). He is many things, charming, funny, gentle, kind, never a burden.

Those who grow up with a disabled sibling don't know any different, they don't judge, children love unconditionally. Being the sibling of a person with Downs has shaped me into who I am, for the better.

I make no judgements about decisions you might make: your body, your family, your choice. I just wanted to give you some insight from an older sibling who lives and breathes what you fear for your existing children. Wishing you all the very best no matter what you decide. xxx

Original poster
AngryBeaver · 28/06/2012 21:28

Thank you all.
greenblue I totally understand what you are saying,but I know that although his brother loves him very much as I said,he is a burden. This man has a farm and workers to run,a wife and small kids a home...and a 21 year old brother,who is not independant at all. And can be quite volatile. It's the brother's wife who cares for him and I know she finds life very difficult.She is not his sibling remember and doesn't have that lifelong love.
She has her toddler and baby to care for.
A girl I worked with also has a sister with downs. She is married to a Nigerian guy with very traditional views. (Their relationship is hard to understand) She doubts very much whether he would tolerate her sister living with them and their children if her parents pass away.
Everyone's situation is different.
I know each of these people love their siblings to bits.It doesn't mean that they want them to live with them and care for them as one of their children.
It's admirable that you would be be ok with that. But I couldn't assume that my children would,and I wouldn't want to put them in that position.

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greenblue · 29/06/2012 07:22

Yeah I get that it's not the same for everyone, we get bombarded with negative messages about disability every day, the idea of disabled people being a 'burden' on society is promoted by the media and government - i just feel its important to readdress this balance and make sure that people hear the good stuff too. Decisions (anybodies) will be much better informed by considering both experiences. Please note I'm not trying to influence anybodies decision either way, I am completely pro choice, a woman's woman, I have nothing but compassion for women facing termination, m/c, fertility problems etc. xxx

Original poster
AngryBeaver · 29/06/2012 08:26

Thanks greenblue...it really is the most awful time. I am pro choice too. My PIL and husbands family are strict Irish Catholics,so I am expecting a backlash from them if we decide we can't continue with this pregancy. My family will support and pity us in equal measure (in the nicest way)
You never know how people will react I suppose.
I have only lived in this country for 6 months but have made a few surface friends. I was having coffee with one the other day (she is religious,I am not) and her view on termination due to disability suddenly became crystal clear.
Her opinion is basically,God chose us to parent a special child and every child is a gift to be treasured. I know if we have to say goodbye to my precious baby,I will have to say goodbye to her as a friend. She is not a bad person,but her beliefs will make it hard for her to get past my decision

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PrettyFlyForAWifi · 29/06/2012 08:35

greenblue I got the impression from Angrybeaver's last post that she's thought this through pretty thoroughly, should she be faced with making a heartbreaking choice in the next few weeks.

Original poster
AngryBeaver · 29/06/2012 08:49

I've done nothing but think prettyfly...day and night. I hope beyond hope I won't be forced to make that decision. But if I do I know what I will choose will be right for my family

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PrettyFlyForAWifi · 29/06/2012 09:01

Yes, it will be. There is no soft option when you're faced with a decision like this.

mummytime · 29/06/2012 09:05

Why do you have to tell people the truth? Sorry if I was in your situation, and although I'd probably make a different choice for DS, but other conditions I would make the same one. I would just say "We lost the baby". Most pregnancies with abnormalities do miscarry, so I see no problem.

With surface friends I certainly wouldn't be discussing the whole thing. Also truly religious/holy people would be concerned for you after the event.

Original poster
AngryBeaver · 29/06/2012 09:46

I will tell most people that we lost the baby. But there are some people here who I have spoken to it about. There is one friend I have who I met on MN,she has been great. Then there are a few "surface" friends. It takes time to get to know people,and I have had to talk things through with someone!
I haven't deliberately spilled my guts to all and sundry,but things have comeout along the way. The next pregnancy after a mmc. The wait to see if there was a heartbeat. The blood around the baby,possibly a lost twin. Then hearing that there was no nasal bone...and all that followed.
I am far away from friends I have had since I was 4...it's been hard not to tell anyone here

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Original poster
AngryBeaver · 03/07/2012 08:58

They found more fluid,on the baby's stomach. Not seeming good

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MadamGazelleIsMyMum · 03/07/2012 09:24

Thinking of you AB.

Original poster
AngryBeaver · 03/07/2012 10:12

Thanks x

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AKMD · 03/07/2012 17:01

Just checking back. Hope it all went ok today.

chezchaos · 03/07/2012 17:16

Thinking about you, and very much hoping for positive news

Original poster
AngryBeaver · 03/07/2012 20:56

Well the baby had grown,and the fluid around the neck had not got any better or worse,but then they found more fluid around the stomach. They think it points towards a heart problem. So now even tomorrows tests come back clear,it's just the first hurdle.I thought that would be it.

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AKMD · 03/07/2012 21:44

Then I hope that tomorrow is the start of lots of positive news for you. What other tests will they need to do now?

Original poster
AngryBeaver · 04/07/2012 02:59

I looked on wiki and it said that edema in 2 or more fetal cavities suggested heart defects or Turner syndrome.
If tomorrow is clear. They will do anatomy scan at 17 weeks (2 weeks time) to check the structure,obvioulsy fluid is not part of the structure.
If that is clear they will do cardio scan t 20 weeks.This is the earliest they can check the heart.
The cut off point,however,for a surgical termination is 18 weeks.
The consultant did say even if the tests were clear tomorrow,there was almost definitely some other problems,and I could end it all tomorrow if I wanted.
I couldn't do that if the results come back negative. I have to give the baby a chance. Maybe,even if it does have cardio problems,they could be fixed.
It would all depend on the severity. I couldn't put my baby through years of op's and pain,and no quality of life. I just couldn't do that. I am bad enough when I have to take my childre nto be vaccinated.I hate seeing them in pain of any description

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