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12+ weeks, possible downs syndrome

(25 Posts)
FromTheInside Fri 23-Sep-11 18:31:25

I hope I'm posting this in a relevant location.

My wife (of 5 months) and I are expecting our first child together. She has one eleven year old from a previous relationship. We had our initial scan three weeks ago and had the pregnancy put back a week due to the size of the baby and had another scan rescheduled for two weeks later (which took place last Monday). After having an emergency appt at the hospital where we were told that the chances of having a baby with Downs Syndrome is one in five, we had a CVS and now have to wait another week for the results.

Obviously, we are both concerned about what the results could be and after talking about the potential outcome, my wife would rather terminate if the results show that there is a chance that the baby has DS. I, however, don't feel as if I could support that decision regardless of what disability it might have.

She also does not want anyone other than me to know about our situation. She's concerned that, assuming she does decide on a termination, people will be judgmental about her decision. However, I've told one of my closest friends what is happening as I needed someone other than my wife to talk to about things.

I'm finding it extremely difficult to cope with this situation, especially having to pretend to family and friends that everything is ok when I feel like I'm dying inside.

Northernlurker Fri 23-Sep-11 18:39:02

Welcome to mumsnet (assuming this is your first post!) There is an antenatal choices section - also under Becoming a Parent where you will definately find a lot of support as well so worth a look.

As far as your situation goes now - don't meet trouble half way. 1 in 5 means 4 chances of a child without Downs Syndrome. I know the odds are not great - but you wouldn't bet your house on a 1 in 5 chance would you?

Try and keep away from people for the next few days because you don't want to have to pretend everything is ok - total nightmare scenario for you both. I would also suggest that you try not to talk too much about what you might do if the tests are positive. You know each other's original response so just wait and see how you feel when you are working from a diagnosis not just a probability.

phlossie Fri 23-Sep-11 18:40:00

Blimey. It's a scenario that I would say most of us think about when we get pregnant. I actually chose not to be scanned for Downs for exactly this reason - it's a decision I'd be happier not to have to make.

However, you have the knowledge you have. Clearly you can't decide without the CVS results - do you know how accurate they are? After that, it's a decision only you and your wife can make. You should seek as much advice as you can, and ultimately you must be absolutely honest with your wife about your feelings no matter how difficult it is. I think it's a good idea to get your feelings straight by talking to someone else, but you need to work it out yourselves. I also think it is too hard a decision to make on your own - I hope you could get help from a counsellor.

It's a very tricky and sad situation to be in, and my thoughts are with you both.

Oeisha Fri 23-Sep-11 18:56:06

Link to your other thread OP

FromTheInside Fri 23-Sep-11 19:00:40

Thanks NorthernLurker and phlossie for your responses and kind words.

I think that we were carried along on a tide once the hospital got in touch. It was a little over an hour fron when they told us to us being there and having the test (my wife works at the hospital in admin, so I think that had some bearing on how fast their reactions were).

The big problem is that we're not going to have much time to talk about what our ultimate decision will be. We should get the results on or before next Thursday and if my wife does decide that termination is the best option, we have approximately three days before the decision for termination is no longer an option.

@NorthernLurker, I totally agree with your comments about it being a four in five chance of a child without DS. It is extremely difficult to focus on the positives when there is such a huge chance of the result not being what you would like. And thank you for pointing out other places where I might be able to find some support, I'll take a look through those forums when I get chance.

@phlossie. According to the consultant the CVS results will be pretty much conclusive. They test for mosaicism (the possibility of taking cells from an undeveloped twin) by taking 15 cell samples. There will probably still be a small margin for error, but I don't know how small that will be.

Just to throw a few more pieces of information into the mix, my wife is 35 years old - she'll be 36 when the baby is due and from the second scan, the nuchal lucency was 4.0mm

Northernlurker Fri 23-Sep-11 19:24:34

Chances are it's the nuchal measurement that's pushed her risk then. It is higher than 'normal' but if you look on the choices section you will find stories with similar that end well. It can indicate Downs Syndrome, it can indicate another problem such as a heart defect (many of which are very fixable) or it can mean nothing at all and just be one of those things that some pregnancies have.

FromTheInside Fri 23-Sep-11 19:30:58

It was the nuchal measurement, her age and the measurement of two hormones (the names of which escape me at the moment) that have increased the risk.

Cherrybug Fri 23-Sep-11 19:54:58

Fromtheinside - just wanted to say I'm so very sorry you are going through this. I know exactly what it is like. I would say, like others have, if you post in antenatal choices section of mumsnet you will get very good advice, a lot of understanding, experience and help.

One thing that isn't correct is the length of time you have to make any ultimate decision. Ending a pregnancy due to abnormalities is possible even much later on. Termination past about 14 weeks is usually medically managed rather than surgical as it is safer at that stage.

I can recommend you also contact a charity called ARC who are very helpful and knowledgable www.arc-uk.org/ if you wish to discuss what the test results mean.

Try to take each step at a time, having a definate diagnosis is very different from hypothetical decision making. There is a good chance that all will be ok after all. Very best of luck.

FromTheInside Fri 23-Sep-11 20:17:03

Thank you Cherrybug for your kind words. We're in Australia, so things might be slightly different here. I understand that termination is possible later than 14 weeks, but if my wife makes the decision to terminate, she doesn't want to have to go through delivering a terminated pregnancy, especially since she works at the same hospital and works with people who would know what has happened, hence her urgency in wanting to make a decision.

I'm trying hard to focus on the fact that there is an 80% chance that everything is going to be ok.

Tewkespeggy Fri 23-Sep-11 20:37:21

i was in the same situation and my friend said to me....

if it has ds does that mean that you wont love it? If its born normal
and then gets run over at six and has lifelimiting injuries, will you stop
loving it?

She said

I know you will love this child, whatever they are like, tall short, able
bodied, disabled, i know that it wont matter to you.

She was right.

good luck to you and your partner at this difficult time.

Chynah Fri 23-Sep-11 21:47:58

I had a 1:12 risk at my combined nuchal/blood scan at 12 weeks - had a cvs and everything was fine and she is now 18 months and gorgeous. I only had to wait 2 days for a initial result wich ruled out Downs/ Pataus Edwardswetc and 2 weeks for a more detailed assessment - can they not tell you anything sooner? Hope all works out for you and you get a great result you want.

wannaBe Fri 23-Sep-11 22:12:17

Op, congratulations on the pregnancy and so sorry that you are having a difficult time right now.
I agree with posters above that it is important that you read up as much as you can and talk to people I believe it's ARC that offer advice to parents, they are certainly worth talking to.

What I would say is that at the moment communication is the key. Nothing is certain until you have the results, but you and your dw should both be allowed to absorb what is happening in your own way. She clearly doesn't feel able to talk about it right now, perhaps because she feels unable to process it, but it is unreasonable of her to expect you to do the same. This is your baby too, and you have as much right to feel scared and upset as she does.

I do think that the options are something you both need to discuss though. As I said above, this isn't just her baby - this is your baby too, and if you feel strongly that you don't want to terminate a pregnancy because of a disability then this is something you need to discuss. If your dw terminates the pregnancy and this isn't something you want then it could lead to huge resentment in the future. This isn't like a normal pregnancy where people would say "her body her choice," clearly this is a much wanted baby, and the fact she is considering termination is down to circumstance rather than the baby not being wanted.

There are lots of posters on mn who have children with downs. Some knew before the baby was born, some didn't. Some find it harder than others because downs is a spectrum disorder which means that people can be differently affected from having mild learning difficulties to having LDs at the more severe end of the scale. But I don't think there is anyone on here who would tell you that they regretted their decision to continue with their pregnancy.

Nobody can decide for either of you what is the right decision. But you both need to communicate clearly with one another how you feel. Don't let your dw railroad you into thinking a termination is the right thing to do just because that's what she wants., or feels she wants. You need to make your feelings clear because this is a one shot deal - you can't go back.

Good luck x

Champagnevanity Sat 24-Sep-11 09:33:37

Years ago, i mean many. My auntie had a baby with downs, and as soon as he was born, they took him off her, told her she would never have to see him, and offered to put him in a home for 'people like that'.

She didn't accept the offer, and he brought everyone so much joy. What your wife wants to do is no different, and that was nearly 40 years ago.

If your baby had a disability no-one could see, it would be different i can imagine. Some people would love to be in the place that your in,

many people long for a baby and cannot conceive where as your wife is considering killing the child because it might be a bit different?

Your wife doesn't deserve this, i'm not against abortion, but purely on the reasoning that the child has downs?

IMO Shame.

ninedragons Sat 24-Sep-11 09:40:17

Jesus, Champagne, a bit of tact and sensitivity wouldn't go astray.

It's a difficult time for both the OP and his wife.

ninedragons Sat 24-Sep-11 09:40:37

or her wife, obv, if OP is in Tassie

WipsGlitter Sat 24-Sep-11 09:42:20

Hi, I have a child with DS and was devastated when he was born (we didn't know beforehand). 18months later things are very different!! Have you asked your wife what exactly she is most frightened about? Life chances, opportunities and the general outlook and acceptance for and of children with DS has really changed.

In some ways I am glad we didn't know beforehand as it took these difficult decisions away.

WipsGlitter Sat 24-Sep-11 09:45:11

Also recommend Kelle Hampton's beautiful blog about her and her daughter Nella. Very realistic and positive. And amazing photos.

Champagnevanity Sat 24-Sep-11 09:58:13

''ooh, im really sorry you managed to conceive a child when thousands of others are struggling, and now facing the decision to kill said child over a 'shocking' disability must be really hard for you to face.''

Nope, not at all. This is bollocks.

Northernlurker Sat 24-Sep-11 10:01:42

Is it possible that people not derail a thread over the rights and wrongs of terminating a pregnancy but rather focus on what is needed here - support and information for distressed parents?

Catslikehats Sat 24-Sep-11 10:08:42

champagne that was insensitive and unhelpful.

Catslikehats Sat 24-Sep-11 10:13:45

I am very sorry you are going through this.

I have been on both sides of the situation: pregnant with a much longed for child who we discovered had downs, who I would have done anything to keep but didn't survive and later pregnant with another much longed child who I knew without hesitation that I would terminate following a 1:2 risk for chromosomal abnormalities.

There are no right or wrong answers you need to talk to each other and support each other as best you can. ARC can be a tremendous non judgemental source of support. Best wishes.

FromTheInside Sat 24-Sep-11 18:27:28

Thank you to the majority of posters that have posted messages of support. As many of you have acknowledged, this is an extremely difficult time for us both.

My wife and I have spoken about since spoken about the situation and I expressed my concerns about termination purely on the basis of the results confirming DS and she is unwilling to terminate unless both of us agree to it. I believe that the shock of having such a risk of having DS (and the associated complications) presented to us triggered her response.

She has also spoken to a friend regarding this, purely to "lighten the load" so to speak and tonight we have visited her sister and brother-in-law and told them what the possibility might be.

@champagevanity: I can understand your stance on our situation, especially considering a family member has been in the same situation. I would however, expect you, of all people, to understand where we are at. If your auntie had similar testing available to her and knew what life with a DS child would entail, would she still have made the decision to continue the pregnancy? Your comments, as previously acknowledged, were extremely insensitive to what we are going through right now.

Our childs potential DS, as a spectrum disorder, might entail a completely different situation to what your auntie went through but I'm glad that your aunts child has brought everyone so much joy. I can only hope that anyone that you know who might go through the same doesn't have to experience your ascerbic comments. I'm also glad that the most you have to worry about at the moment is the size of your feet and not being able to wear any of your shoes (http://www.mumsnet.com/Talk/pregnancy/a1306149-Random-or-silly-things-youre-worried-about)

why5am Sat 24-Sep-11 19:50:38

We were also in a similar situation with DD1. In the end the CVS showed she didn't have DS or any other chromosonal disorder..

I don't have anything much to add to many of the words of wisdom above. The only thing I knew was that I'd be unable to make a decision unless I had all the information and time to think.. And that my OH and I also had different initial instincts which was hard, but so important to keep talking and take things one step at a time.

Our CVS results also took less than 2 days. Is it worth asking if the hospital can turn them around quicker to give you more time?

Cherrybug Sat 24-Sep-11 21:18:03

Fromtheinside, the problem with this being in pregnancy rather than antenatal tests/choices is the risk of unhelpful and naive comments that people like champagne, who hasn't a clue what it's like to be in your position, think it's ok to spout at a time when you are going through sheer hell. Sometimes peoples lack of emotional maturity and empathy is utterly depressing. It is not possible to know what you will do when given a diagnosis of a disorder during pregnancy. Many think they know what they would do and find the reality is very different. Knowledge brings the burden of responsibility and raises lots of questions and considerations previously given little thought.

As you say DS is a spectrum and there are varying degrees of severity and additional problems. It's just stupid to think all people with DS are the same and will have the same quality of life. Which is why such a decision when a diagnosis is made in pregnancy has to be what is right for that particular family, in their particular circumstances with the individual medical information they have been given after diagnostic testing and scans etc.

It's great that you and your wife are able to discuss this and support each other. At the end of the day no matter what decision you make, if you have to make one, it will be a joint one. It's also good that she is confiding in others. Most people thankfully are not full of judgement but just feel so sorry that you are having to go through such a horrendous uncertain time.

I really hope you get the all clear and can put this behind you. You will have to wait for the full results to come through to know there are no chromosomal abnormalities at all but hopefully you'll get the fast results very soon which will give you the downs result. One step at a time. And once you know what you are facing, if anything, you can jointly work through things. I think the not knowing is so very difficult.

Let us know how you get on and all the best.

Crosshair Sat 24-Sep-11 21:23:20

I would also recommend the antenatal tests/choices board. Some of the replies on here are truly awful and insensitive.

Wishing you a good outcome.

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