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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Down syndrome pregnancy

36 replies

MonaRoza · 26/09/2015 21:20

Hi all. I am almost 16 weeks pregnant and going through the hell, having just learned that my baby has Down syndrome. Something that I could never imagine happening....we had the initial screening that came back as very high risk. Then chose to do the private non invasive test, which came back with greater than 9/10 risk of Down syndrome. We have taken the very heart braking decision to terminate the pregnancy and now waiting for the date of the procedure. In the meantime I wanted to do the invasive, amniocentesis test, as the other test has accuracy of 98% and is regarded as screening test (and not recognised under NHS), whereas amnio has 99.9% accuracy and is diagnostic. My husband, a medical professional, thinks I am being unreasonable. All I want is not to have the slightest doubt that I am ending the life of a baby who may have the smallest chance of being healthy. I don't want to have a termination and have the doubt at the back of my mind, saying what if. It is such a difficult time for us already. To have my husband make it even more difficult simply because I choose t undertake the additional test is heart breaking and making it even more unbearable for me...up till this week I haven't told you anyone that I was pregnant. I just shared the news with my cousin as I can't bear the sadness inside anymore...I wish my husband and I could have supported each other more at this hugely difficult period....I just want to make sure I am doing the right thing....but he is making me resent him for not supporting me....how can we get through all this?

OP posts:

Gingerlady123 · 26/09/2015 21:27

I know someone with Down's syndrome.
My partners brother. He is 21 now and can pretty much function on his own. All he needs is his shoes putting on and his hair washing for him as he only has use of one hand. Other than that he is perfectly healthy and goes to work. He is as happy as can be and such a lovely person.
I'm not judging and the choice is yours only to make but are you sure you would want to terminate because of downs? I would seriously consider thinking hard about terminating because although this baby could have downs it could lead a nearly normal/very happy life.

kinkytoes · 26/09/2015 21:33

This is why I refused the Downs test. I personally did not want any additional worry during my pregnancy or any invasive procedures to remove doubt.

I wouldn't terminate for Downs though, so I guess my situation is very different.

Sorry OP I do understand that you want to be sure before going ahead with a termination. But make sure that you ARE sure. It's your body and your decision.

Champagneformyrealfriends · 26/09/2015 21:33

I have nothing to say other than I'm so so sorry you're going through this and I totally understand your decision. I would want to eliminate any doubt too though.

EldonAve · 26/09/2015 21:35

I thought most NHS trusts want you to have a CVS or an amnio before they will book you for termination for fetal anomaly
It is perfectly reasonable for you to want confirmation by amnio

What have the hospital said about a date for the procedure?
Be aware that some places the only option will be medical not surgical

Sorry you are going through this

LibrariesGaveUsP0wer · 26/09/2015 21:37

What does your husband think is unreasonable about having amnio?

I am so sorry for your situation. Just picking up on your language though, a child with Downs syndrome does have 'the smallest chance of being healthy '. Many lead very full lives. So without wanting to pressure you, do make sure you understand the diagnosis.

Original poster

MonaRoza · 26/09/2015 21:42

Thank you for taking the time to respond. I had to do a lot of soul searching. I know some people with mild Down syndrome goes on to have relatively good lives, but for me the challenge is there is no way of telling whether this baby will have mild or severe downs. And there are a so many other health problems that a child with downs my face, including serious heart defects. I know a family who decided not to terminate, and week after week the little girl had to spend in hospital throughout her life. I feel that I am making the best decision for my baby and my family....so I am sure of my decision to terminate. I just want to make sure that there is no doubt about the diagnosis....and want a husband that supports me rather than patronise me be because he is a medic and the odds are against me...

OP posts:

beaucoupdemojo · 26/09/2015 21:45

I think you are right to want to remove all doubt. I think that maybe your husband sees it as delaying the inevitable and therefore unnecessary, but should understand that if you need it to put your mind at rest then you should have it.

I know somebody who terminated a much wanted pg last year for the same reason as you. It is so sad and difficult. I'm so sorry. I hope your husband comes to understand why you need this, but even if he doesn't I think it's important that you do it anyway. As the person who actually has to undergo all procedures and with whom the ultimate decision regarding the pg resides, it is very important that you feel your choice is the right one and that you get every reassurance that you need.

LibrariesGaveUsP0wer · 26/09/2015 21:45

Ah, so he thinks that you should be content with the tests you have had and are clutching at straws.

In that case I think he is big an arse. For peace of mind it is perfectly rational and sensible to want the diagnostic test. It is also totally understandable emotionally.

Is he normally like this, or do you think he had shut down to cope with the news?

Original poster

MonaRoza · 26/09/2015 21:46

Thank you...we have been recommended by hospital to use the charity BPAS for surgical termination....so they don't necessarily require us to have the amnio given that we have done the other test which is based on DNA testing of the maternal blood...how I wish I didn't have to have face this huge, life changing event...it is an emotional rollercoaster :(

OP posts:

kinkytoes · 26/09/2015 21:47

You will need to put your foot down then. Pregnancy and parenthood really do bring out the differences between couples like nothing else, I've discovered! But surely he has to respect your wishes on this occasion. I can't see a good reason why it would make any difference to him?

Grizzer · 26/09/2015 21:50

Your husband may be trying to protect you from further tests & prolonged distress but you are right to be absolutely sure or you will always have a slight doubt in your mind. Sorry you are going through such a difficult time. The hospital should offer you some counselling. Please make sure you take advantage of that. You are having to make such a difficult decision you will need someone to talk to afterwards.

Original poster

MonaRoza · 26/09/2015 21:55

I think he feels I am delaying the inevitable, perhaps raising my hopes, and that I will end up having to deal with yet another heart breaking call from the hospital...

He is a good man, but there is a certain coldness and arrogance that comes from being in the medical profession (I know you can't generalise, but that's how he is!)....

Thinking back he was a pain with our first child, very patronising at times, and completely ignoring my instincts as a mother....then I thought we had moved on...but perhaps not...

OP posts:

EldonAve · 26/09/2015 21:57

How long is the amnio going to take?
Have you already booked the termination?

Original poster

MonaRoza · 26/09/2015 21:59

I will stick to my decision of having the amnio....thanks for the suggestion of seeing a counsellor...I think I will have to...I wish my husband would accept taking to someone as well, as clearly he is in a lot of distress...

Thank you ladies for responding to a complete stranger and making me feel that I am not all on my own...much much appreciated...

OP posts:

Original poster

MonaRoza · 26/09/2015 22:00

Amnio is booked for Monday. Results should be out by Wednesday. Termination booked for Ssturday :(

OP posts:

MarshaBrady · 26/09/2015 22:01

I don't blame you for wanting the amnio. It must be a very difficult time for you, but you must do what you feel you should.

GloriaHotcakes · 26/09/2015 22:06

This reply has been deleted

Message withdrawn at poster's request.

PlopsyWhopsy · 26/09/2015 22:07

Your decision to terminate is right for you. But I think having the amniocentesis will help massively with your processing/grieving process to come. Agree that your DH is trying to protect you from further distress, but not going about it in the right way.
Sorry you are going through this x

May09Bump · 26/09/2015 22:08

For your mental health have the test, you are going to have such a difficult time as is - you don't need any "what if's" in the background.

I'm so sorry you are going through this, it is a very brave decision and I completely understand why you are going through a termination.

I'm not going to comment on your DH as he is probably in shock too, just follow your instincts.

Skiptonlass · 26/09/2015 22:31

I think definitely have the amnio. Regardless of the percent or so, or the technical differences between screening and diagnostic testing at this level, it's about how you feel, and how you will feel about this decison for a long time to come.

I understand your husband's position, but I would have the amnio - you can't leave any doubt and I think having it will help you process this better.

So sorry - it's a heartbreaking choice to have to make.

greatbigwho · 27/09/2015 04:43

I nothing I've read here suggests you're hoping that the test shows that your baby is healthy - just that you want to make absolutely sure that the diagnosis is correct. Without meaning to sound patronising, have you pointed that out to him?

I hope the next week goes as smoothly as possible for you.

docmcstuffins1 · 27/09/2015 09:16

Sorry you're going through such a difficult time. I understand your decision to terminate and would consider it myself if I was in your position, everyone is different and you need to make the decision that is right for you.

If you already have worries/doubt/guilt about the tiny possibility of terminating a 'healthy' child you NEED to have the amino, otherwise that doubt/guilt may haunt you for the rest of your life, which is so unfair when there is something that can be done to help you be 100% sure of your decision.

Stick to your guns and tell your DH it's your decision and he needs to support you.

LibrariesGaveUsP0wer · 27/09/2015 10:15

I have had amnio (though a happy result ).If you want to ask anything about the procedure I'm here.

So sorry for what you are going through . I am sorry too if my previous post came out wrong. I understand fully why you would terminate, especially with older children. I just wanted to comment because of your wording to check things had been well explained to you. I don't know what I'd have done with a positive result, but quite possibly the same as you.

NorahM · 27/09/2015 11:06

The Hamony test is not a diagnostic test so I'd be surprised that a hospital would book a termination without insisting on a CVS or amnio?

MrsPCR · 27/09/2015 13:51

I'm so sorry OP to hear your awful news.

Definitely have the amnio test. It doesn't sound to me as though you're expecting it to come back with good news, but it will help you know you have made the right decision. You will never doubt or question of one test was wrong.

I mean, how many of us believed the first positive pregnancy test and did have to try another brand (or 3 if you're like me) before believing we were pregnant? Anyone else still POAS every few days until 12 weeks scan? I knew all those tests would come back positive, and you know in your heart this test will confirm, but it didn't stop me doing the tests.

Good luck. Put your foot down and say you are having this test, preferably with his support for your own mental sanity and so that you can always say you did everything you could. Good luck.

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