Active discussions

Please or to access all these features

Talk
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.

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.

OP posts:
MissBlennerhassett · 04/07/2012 09:09

There's no advice I can give you but just wanted to send you my best wishes. Desperately hope you get good news and are being supported well.

Coxy7 · 04/07/2012 10:23

Hi angryBeaver

I have jus started a thread but didn't realise there was all ready one going.

I've been reading through all he messages and crying all morning as we to are going through a similar ordel.

I'm 38 and have been trying for 5 years with no Luck and lots of complications which I wont go into. We embarked on Ivf and am now 12 weeks gone.
We went for a private scan yesterday to be given the devastating news that are baby has a 1 in 4 chance of downs. The nuchal translucency behind the neck is 3.8, the bladder is enlarged at 12.8 which they call megacystis and it has a leak in one of he heart valves.

We are going bk today for a cvs and should get the results on Friday.
I've been up all night crying as this is our last hope of becoming parents as we can't afford Ivf again.

Good luck for tommorow.
X

PosieParker · 04/07/2012 10:46

Awwww I'm really sorry to both of you, how utterly devastating.

xxx

Original poster
AngryBeaver · 04/07/2012 22:44

Coxy7. I am so sorry. It must have been such a shock.
I hope they are able to do the cvs and you get swift results xxx

OP posts:
Original poster
AngryBeaver · 05/07/2012 08:04

Bad news for me. Seeing dr tomorrow to "talk through my options" we have decided on a termination.Does anyone know how this will happen?

OP posts:
ElephantsCanRemember · 05/07/2012 08:08

AngryBeaver I have no idea but i just wanted to say I am so sorry for what has happened. No consolation I know, but I am sending you (((hugs))) and keeping you in my thoughts.
You must do what is best for you and your family, I hope you find comfort in each other xxxx

WipsGlitter · 05/07/2012 08:12

I'm sorry to hear this. x

AKMD · 05/07/2012 08:54

Really sorry to hear that :(

MissBlennerhassett · 05/07/2012 09:02

Very sorry AngryBeaver. My heart goes out to you and your family. Wish I knew what to say.

PosieParker · 05/07/2012 11:36

I've no idea, but keep strong, get counselling and expect to grieve. There is a section/thread for terminating for anomalies.

So sorry xxx

jdutch · 05/07/2012 13:41

So sorry you're going through this angrybeaver. I had to have a termination for Edwards Syndrome 2 weeks ago. Have you contacted ARC yet? It really helps to talk to people going through the same thing as you. xx

Original poster
AngryBeaver · 06/07/2012 06:38

I need some information if anyone can help?
I have had to fight all day to get a surgical termination rather than a medical one. I have to travel over 2 hours away and stay in a hotel because they said I have to have surgical rods inserted,and then come back the next day for the operation. Does anyone know anymore about this?

OP posts:
LittlePoot · 06/07/2012 08:05

Oh I'm so sorry to hear it's worked out like this for you. I know how devastated you will be feeling. In my hospital, they won't ever offer surgical termination beyond 12 weeks because they feel the risk of artificially dilating your cervix that far is too great. Although the medical procedure is not as quick for the woman, it can be kinder to the body in terms of future pregnancies. I totally understand that you'd rather have the surgery-I've had both now-but do make sure you know the info about both. If you were to go for the medical procedure, my advice is to get hooked up to a morphine drip straight away to keep the pain to minimum and take you away from it a bit. Either way, I hope things go quickly and smoothly for you so you can start to rebuild. Really sorry for you.

Original poster
AngryBeaver · 06/07/2012 09:07

They told me that the reason noone would do it here was down to ethics?

OP posts:
LittlePoot · 06/07/2012 09:58

Ethics? I don't really understand that. And I'm afraid I haven't heard of having surgical rods inserted either. The way they did mine was to use a pessary to soften the cervix then under general anaesthetic, open the cervix and essentially clean everything out. Mine was earlier though - due to a missed miscarriage, so foetus had stopped developing at about 10 weeks. At my hospital (Addenbrooke's in Cambridge) they don't perform surgical terminations past 12 and a bit weeks, although I know many hospitals have the cut off at 14 or 15 weeks. They seem to have different views on the risks of manually opening a cervix I think. Again, I think getting in touch with ARC might let you find out some more about what's going to happen, if you'd like to, or to talk about the options which might be available. I'm so sorry you have extra stress in what is already a horrendous situation for you and I hope things are resolved soon. x

LittlePoot · 06/07/2012 10:00

www.nhs.uk/Conditions/Abortion/Pages/How-is-it-performed.aspx in case it's any use to you. It's a bit harsh - it's not really aimed at women terminating because of problems with the baby, but the basic information is there.

ghislaine · 06/07/2012 16:26

AB, I really feel for you. I'm so sorry this has happened, and in a new country too, where you don't always know what to expect or how things work.

What I suspect your local hospital means by 'ethics' is that there is iirc, an opt-out provision for medical professionals in the provision of terminations under the Contraception, Sterilisation and Abortion Act 1977. If you are having a second trimester termination, it may well be that there is no-one locally who is prepared to do that. And NZ is so small, we may only be talking about one person. Women on the west coast, where there is a high concentration of Catholics, are often affected by this. Or perhaps there is no-one with the surgical expertise there, so they want you to have your cervix prepped before they will go ahead. I'm so sorry you have this stress on top of everything else.

I would try contacting ALRANZ (www.alranz.org). There is a mobile no listed under 'contact' and under 'links' some other organisations, like Auckland Prochoice. There's also this place: www.amac.co.nz. As I said, NZ is so small, you may end up talking to Margaret Sparrow herself.

Wishing you strength and peace.

Coxy7 · 06/07/2012 19:38

Hi angry beaver

So sorry for your news we have just had bad news to results have come back as down syndrome in a complete mess don't know what to do...

I'll check out arc and then see what my options are...

PrettyFlyForAWifi · 06/07/2012 19:49

Coxy7, I'm so very sorry to hear your news, you must be in a state of utter shock. Have you spoken to ARC yet? They were wonderful to me when my dd was diagnosed with heart defects at the 20 week scan.

Coxy7 · 06/07/2012 22:36

No I haven't can't stop crying but I'll phone thm first thing
Thanks

Original poster
AngryBeaver · 07/07/2012 00:39

Sorry coxy7 Sad

OP posts:
freshfruitsalad · 07/07/2012 20:34

Hello ladies
I am in a similar situation to coxy7

We were trying for 2 years (yet not using contraceptives for about 8)
Finally found out we were expecting in Jan, due October
Week 12 scan showed a high nuchal, bloods came back with 1;5 risk
We put off amnio as we wanted to beleive we were in the 80% chance OK and we wouldn't have terminated just for DS
The 20 week scan showed more signs of DS
Amnio done the same day, results were positive for DS

I'm 38, it could be our only chance of having a child seeing as I'm so blooming old and it took so long before lol
So still we cannot terminate

We have joined local support groups and been very open with it with friends and family, everyone is supporting us and I know we won't be short of physical and mental support

I'm feeling very positive about it all, I feel it's going to be the challenge I've been waiting for

I feel for you both as I know how hard it's been for us to make our decision to carry on
There is no right and wrong decision, you make your choices based on what is right for you
xx

Original poster
AngryBeaver · 07/07/2012 21:52

Hi freshfriut, thanks for sharing your story. I wish I could be as strong as you. But I found out from my GP last night that it wasn't just Downs our baby was suffering from,but likely a whole host of other impairments. She told me I was doing the right thing,and that my baby may not survive very long after birth anyway. That has taken away some,but not all of the guilt. I'll never be free of that,I fear.
My friends were in the same position as you,they had tried for a long time and lost a baby before. They decided that they would keep their baby. As it turned out,he was fine,but they were fully prepared for a baby with downs and knew that it was right for them.
I'm really glad to hear you have lots of support,I'm not sure I would have had the same.
Congratulations,and may the rest of your pregnancy be uneventful. Enjoy your little one
xxx

OP posts:
WipsGlitter · 07/07/2012 22:14

Hi freshfruit. I have a little boy with downs. Theres a good Facebook group, future of downs, lots of people with younger children. Any other questions pm me.

Coxy7 · 08/07/2012 11:13

Hi freshfruit

I to wish i Could be as strong as you, I don't yet know the serverity of the babies condition only that they have a leak in the heart valve and the bladder is twice as large as normal indicating that the baby can't empty it. I'm 95%sure we are going to go ahead with a termination but I keep getting a little voice in my head saying not to give up.

Why is life so bloody hard?????

Anyway I admire you for making the decision that you have and good luck with the rest of your pregnancy.

You may have already seen the app called changing perspective If not down load it if you can www.shiftingperspectives.org. There's also a lovely poem called Welcome to holland.

Xx