My baby has Downs Syndrome

[jools70]

Just found out this afternoon that our baby has downs we are devastated, do not know what to say. One min I am ok the next crying my eyes out.

We had IVF at 39 we were expecting twins then we lost one at 9 weeks now have this as a second blow.

I desperately want a baby but I am so torn

thank you all again for your comments, I have read the websites and think I have all the information I need to make my decision and then I go and log on here and my mind is not made up so I think it has just been quite a day for us and I think we need to give it time and let the news sink in. I'm sure the midwife will have lots of info to give us tomorrow.

bathbuns - I remember being sent the link to that lady's birth story, had me in floods of tears but very poignant

abiabi - thank you hun DP is not doing too well he is keeping it all in, and to be honest I am trying to be strong, we both don't feel like eating I just have a sick feeling in the pit of my stomach that won't go away. I don't want to be unhappy as they say the baby feels that I just feel terrible to have such terrible thoughts about termination.

Very best wishes to you whatever you decide. Thinking of you both x

I'm so sorry you're going through this Jools, and I hope you can find the strength to make the decision that is right for you, whatever that may be

I wanted to link to a page that I saw ages ago now, which is a blog someone had been keeping for a while. she was expecting her second child who was born with DS. they didn;t know.... anyway the link to her birth story is here

it WILL make you cry, but it's worth a read, and if you then go on to read the rest of her blog... what they've been up to since, well... it's one of the most inspiring blogs I have ever read and maybe can give you a glimpse into what life might be like with a child who happens to have Down Syndrome

Oh Jools

First of all you are allowed to feel however you want to feel, it won't affect the baby. You've had a hell of a shock, no one blames you for being stunned. It's such a shock when someone tells you there's something 'wrong' with your baby, I can't even describe it., a mixture of fear, panic and stomach churning sickness.

You are NOT a terrible person to be considering your options, you're just human. No one here thinks your terrible, especially after reading all you've gone through.

I'm glad the midwives coming over, do you get on with her quite well?

jools - this may sound mad, but if you need distraction tonight, just go for it - we had a diagnosis of anencephaly with dd1, and a couple of hours later we found ourselves frantically buying comedy DVDs, just to let our heads not think about it for a bit. Sounds vile, but we needed it, and it helped, though I don't think I'll ever watch northern exposure again. Be kind to each other, and give yourselves some time to come to terms with the news before you make any decisions.

You and your other half must make the decision that you need to, and I would hope that everyone in your life would support you as you need and deserve to be, whatever that decision is.

When we found out at our 20 weeks scan that our baby had a "anomaly" - a cleft in our case, I was devastated. However, as someone later pointed out to me, special babies are given to special parents, and you don't get given more than you can cope with. Whilst a throwaway comment from someone I didn't know, it did give me strength.

I totally second Habbibu- the morning I was meeting the midwife I spent a few hours watching the sex and the city movie - I HATE that film, absolutely loathe t, but it did take my mind off everything for an hour or so. I recommend Bill Bailey / Russell Howard for non offensive, distracting stuff.

That link that thisisyesterday posted had me in floods of tears. I do believe that we don't get given more than we can handle and that there is a reason for everything. I hope you have the support you need to help you make the right decision for you.

Is it definite, or have you just been told you have a high risk of baby having DS?

FWIW I know some wonderful people with DS, including a friend the same age as me who died just weeks before my DS1 was born (he was born on what would have been her 24th birthday). Take the time you need to digest the information, read up about things, have time for some 'light relief'. It's no wonder you feel shock. I find this is quite a positive uplifting link here

I don't have any experience of special needs children and I can understand your shock. Had it happened to us for our first baby I think we would also have seriously considered terminating. There are lots of posts on here with further info and take what time you have to be fully informed before you make your choice.

It seems to me that to a large extent babies are the same when they're born because they need your total 24 hour care. Then they all develop at different rates and in different ways but they do so at a pace where you can come to terms with them as they are. Ultimately they're your child and nothing can prepare you for how protective you feel of them. I think now that if we came back with a high downs risk for our next DC we may well proceed with the pregnancy.

oh you shouldn't feel terrible for thinking about termination. Most people in your situation think about it and many make that decision. As long as you make the decision that is right for you then you will be making the right decision and you don't actually have to justify it to anyone.

Blimey thisisyesterday - that's a very powerful blog post - I think the photos in particular really capture the moments and emotions.

I know quite a few children and adults with DS jools (my eldest has severe autism) - it's very hard to understand what life is like as a parent of a child with learning disabilities without experiencing it as a parent. It's not something I've ever been able to put into words. DS1 has given me some of my hardest moments, but also some of my happiest (and some of those happiest moments have occurred because of his disability which is something I wouldn't have predicted).

I'm a big believer in gut feelings when it comes to a decision like this - because ultimately it will be easier to live with whatever your gut is saying to you. There is no right or wrong decision, just the decision that's right for you. You have time to think about things and imagine the different options (I say imagine as that's how I work out what my gut feeling is).

I had an amnio for a high risk bloods result. Our baby is ok. I personally would not have terminated for a positive result, I just wanted to know what we were dealing with. However, anyone who judges you for terminating is a hateful person! Its entirely up to you what you do. Its a totally personal and very difficult decision.
Have you spent any time with a child with downs syndrome? I think you should arrange to do this before you make any decisions. Its amazing what a great quality of life children with DS can have, and how much joy they bring to their families.

I work with special needs children and have had the joy of working with children with ds. From talking to all of their mums - you need to just breathe for the next few days. Its a huge amount to absorb and is overwhelming but before you make any decision on termination check out the various forums here and look at your local area. There are fantastic support groups and other mums who will give you all the advice you need without any sugar coating and they have been where you are so you will not be judged. If you choose to terminate then at least it will be with the peace of mind of knowing you took it all in and made a decision based on what you feel you could do.
Also bear in mind that for now there is a grieving process too. You had geared yourself up for a certain future with a 'normal' child. Now all that has changed and you face what feels like a great unknown. you must grieve for what you have lost in order to accept and see the beauty in what you have gained. Speak with other mums who have children with DS they will be the best counsellors. Take care x

My DS3 has Downs Syndrome. Had I been told that when I was pregnant, I am not sure, but I strongly suspect I may have terminated. I would have felt it was unfair on my first two DS's and that I couldn't cope. My third pregnancy was an accident as it was and I hadn't even wanted any more children, let alone a 'disabled' one. I am not that maternal and quite selfish I suppose.

All I can say is, thank goodness I didn't find out until after my son was born. By then, baby was first, Downs Syndrome was second, whereas had I found out when pregnant it would have been the other way round and the Downs would have seemed like such a huge thing, when in reality it's just no big deal. Of course, it was all very frightening, and I worried about the future, but my son was really just my baby and he was FAR easier than my other (very easy!) babies had been. He did have two holes in his heart and had surgery to close them at 6 months old. He sailed through it. He is now 6 1/2 and wonderful! I am split from my sons' father and met my DH when DS3 was 4 months old. my DH loves him like he is his own and we both decided in my recent pregnancy that we wouldn't test for Downs as it really didn't matter.

Having a child with Downs is different to having a child without it. It isn't worse though.

If you want to email me, feel free. My email is [email protected] I am not sure if it will help at all, but you never know.

I had a high risk result with my baby and had CVS which came back all clear. I would have terminated had the result been different as neither me or DH felt it was something we could deal with and also felt it would hve been unfair to our exising child. I think you have to do what you feel is best for you and your family - no on else is in any position to judge you.

Hi, I posted on your previous thread, I'm so sorry hear your news.

My heart goes out to you, it's a difficult decision you have to make.

Around 95% of people who have amnio/cvs and discover that the baby has Down or another trisomy, do terminate the pregnancy (people who are very against termination tend not to have the diagnostic tests).
My pregnancy was very high risk, and we would have chosen a termination, having already discussed all the different aspects - including the effects on our other children, and the affected child too- we are in our 40's and in the case of Down, people with this condition, with good medical care, can live into their 50's even 60's now, so what happens when we are gone?
The head and the heart may say different things to you - but there is not just the baby to consider, or the child, but also the adult, and the particular needs they will have in the years to come. Research all that, get as much information as you can.
Whatever you decide, you need to be sure it's right for you. Whatever you decide, WILL be right for you.

I don't know if you can think about the future or another child at the moment, and maybe this is hideously insensitive,
but if you choose to try for another child, as you are having IVF anyway, you may be a good candidate for PGD (the cells of the embryos can be checked before implantation).
I'm sorry if that comes across as callous, I don't mean it to be. wither you choose to continue with this pregnancy or not, you may want to have another child in the future and I just mean that you can use PGD to avoid the risk of an affected baby next time.

I wish you well with your decision making.

Jools...you can contact me too if you like.
I was in same situation. Because my dad died I was late having my blood tests and I found out I had 1 in 13 chance of Down's.
It is SO hard. Unless you have been through this you can't really know the horrible guilt and torment.
My DH and I chose to terminate...more for our DS 1's sake. We didn't think it was fair on him. After all, he would have ended up being responsible for her eventually when DH and I were too old to cope.
Ironic really, that Down's children are born to older mothers usually....if we had both been younger we might have felt more able to cope.
We had fantastic support fron ARC (Antenatal Results & Choices). Do contact them....I phoned them constantly after my termination and they were wonderful.
But it is hard. Whatever you decide to do, you know you will be doing it for the right reasons.
My thoughts are with you.

Would just like to add that I went on to have 2 perfectly healthy babies afterwards, so don't despair.

BTW, Midori, you are NOT selfish!

I don't agree that siblings are usually responsible for their learning disabled brother or sister when adults. They might have to sort out social services (although that should be set up so will probably be a lot easier than sorting out care for a parent with dementia for example), but I think the days of hands on caring for their sibling have gone. We certainly don't expect ds2 and/or ds3 to care for ds1 as adults, and all the adults I know with DS live semi-independently. I think that's rather an out of date view tbh.

LOL. I am quite selfish really. I don't mean that in a negative way at all, I just wanted to point out I am not some overly maternal person who lives for her children. I firmly believe in having my own life as well as my children, and do so.

Everyone needs to make what decision is right for them, but I do think people with no real experience of Downs think it is some huge deal, when it isn't.

My last pregnancy didn't go so well, as some on here will know. I lost my twin girls at 15 minutes and 9 days old, after they were born at 23+5 weeks. (my waters had gone at 14+5 around twin 1). I would have done absolutely anything to be told my babies would live but would 'just' have Downs Syndrome.

Hi jools, whatever you decide make sure it is YOUR decision, please don't feel pressurised in to making a decision until you are ready & remember what is right for one family may not be right for another.

The news is a shock and you need time to digest it.
My ds2 does have sn (not ds but certainly many similarities) and while at times it is hard he is also just as wonderful as his brother, we worry about them both in equal measure just about different things.

take care of yoursleves, talk to each other & be kind to yourself x