just found out our baby has downs syndrome any advice ?

[bogsyripple]

hi, i am 26 and am 13 weeks pregnant just found out our baby has downs syndrome, going to see the consultant today, but any advice from people who have been through similar would really help thank you

[MavisEnderby]

Hi bogsyripple.

If you post in the special needs section as well you will find lots of info about DS.

best wishes Mavisxx

[ajandjjmum]

So sorry that you're having to cope with this, and really can't advise you how. But having been told that my DS would be born with a deformity at a scan, I can remember the absolute devestation we felt, and truly believing that I could never be happy again. You have to work through this in whatever way is right for you, but the sun will shine again. I adore my 18 year old DS and wouldn't swap him for anything.

Talk to as many people with experience as you can.

[WipsGlitter]

My DS2 was born with Downs, he's now one year old and a great wee boy. It was a big shock, we found out at birth, and it took some time to get used to the idea, but we would not be without him. Feel free to PM me. x

[RememberToPlaywiththeKids]

Hello - how did you get on today with the consultant?

Our DS was born just over 2 weeks ago and he has DS. We had a high risk at the nuchal scan but chose not to have a CVS / amnio, so didn't really know for sure until he was born.

I found talking to the Down Syndrome Association and also ARC very helpful. I also set up a few threads here to pull on the experience of people who have DCs with down syndrome.

You have to do what's right for you - someone said to me once - not knowing and fear are often far worse than the reality and often we act on fear and the unknown when there was no need to.

[AngieM2]

Oh Bogsy, what awful news! I bet this has hit you like a truck. I dont really have advice about what its like having a baby with DS unlike the other posters. I found out in November my baby had DS - I went straight for CVS at 12 weeks as I was 40, hadn't even had a nuchal scan and really was just having the CVS for reassurance - well, what a tremendous shock we got to be told the baby had DS, so out of the blue, we were devasted. For us, we decided to terminate, rightly or wrongly I would never have continued with the pregnancy. Its been a hard few months since November but I'm getting on with things now - though the due date is looming and if I see one more pregnant friend or celebrity I will bloody scream! I hope you are keeping well and looking after each other and if you need any more info you can PM me. A

[BeingHumum]

Hi Bogsyripple

I am so sorry you are going through this, it is the most difficult decision you will ever have to make. I got a positive diagnosis at 17 weeks 2 years ago. I was an older mum at 37, I knew the risks but never expected it would happen to me. I have a little boy who was 2 at the time, and I always knew that I wasn't cut out for the lifetime challenge of parenting a child with Downs Syndrome. I decided to terminate and the decision was the right one for my family.

The decision wasn't without consequences, I had counselling to come to terms with it. What I would say to you is it is much better to know at 13 weeks, as if you do decide to terminate it will be less traunatic for you and the baby. The main thing I felt guilty about was terminating so late.

ARC helped me a great deal after the termination, but they can also help with your decision. The Downs Syndrome Association will help you too, and give you lots of information about bringing up a child with Downs.

It really has to be your decision though, don't be too influenced by other people. Decide what's right for your beliefs, your family and your future. Take care x

[angel1976]

This is a beautiful blog written by a mother who did not know her second DD has DS until she was born. It's a really beautifully written blog, the birth story is amazing. I hope it helps. Good luck whatever you decide.

[Dammyoucomfortzone]

Please get in touch with antenatal results and choices arc, they can really assist you regardless of what you decide to do. I had a termination 4 years ago as our son had DS and though it was very difficult it was the right decision for our family.

Whatever you do I wish you all the best.

[AdiVic]

Hello

Just seen your thread and maybe you have finished looking at it, but I'll write anyway:)

I too had the same result 4 weeks ago, and made the decision to terminate. I have worked with children with learning difficulties and my 2 sisters have LD. This influenced my decision, but didn't make it any easier. Like BeingHumum said, it is a very hard decision, and I was suprised how upset I was. My pals and I have discussed such predicaments before, and until you go through it, you have no idea how you would deal with it.

The whole process is not pleasant, and mentally it is a head f**k (sometimes you just HAVE to swear). I am still off work, i tried going back but i was too weepy, so be really gentle to yourself.

Like another poster here said, do not let anyone influence you, it is YOUR decision - listen to your gut instinct and remember to ask what % of women DO terminate. I really feel for you - it's a hard time, but we will get through:)

Whatever you decide, all the very best xx

[eidsvold]

my daughter was born almost 9 years ago with down syndrome and life is wonderful. She is the big sister to two other girls - both of whom are actually far more challenging to parent than she is. LIfe is great. She attends mainstream school part of the week and special school the other part of the week, she attends dancing and swimming and is a very active little girl.

Her sisters adore her, she is a very important part of our family and extended family.

Advice - contact down syndrome association - arm yourself with knowledge.

As a new parent supporter I found parents felt overwhelmed by the unknown - they just wanted to know what my dd was doing - you know -walking, talking reading, writing etc - and yes she is doing all of that and more.

For us the hardest part is dealing with other people's ignorance and seeing her through cardiac surgery at 8 weeks old.

[NatzCNL]

Bump x

[edy1]

bogsyripple Im sorry to hear your news, I also found out 2 weeks ago that our baby will have Downs. Now 16-4 weeks pregnant. We also found out the baby has a hole in her heart

Everything is going through mine and my Husbands minds. From utter shock, We are committed to the pregnancy, but every second have thoughts about whether this is the best thing to do for the baby and us. I also worry about being selfish having the baby. We have spent every hour reading and reading about DS, but there is so much out there its hard to know what to take in.

Also being 33 and our first baby Im worried about future babies. I have been in touch with ARC and the DSA but kind of feel we are left alone. Am really interested in hearing any other experiances.

[Sparklies]

edy1 - Babycenter has a fairly high traffic Down Syndrome Pregnancy forum. It's quite US-centric but you may find support there.

I'm sorry you're going through such turmoil right now.

[MrsGrotBag]

Hi edy1 - congratulations on your baby! I could have written your post myself. We were given a 1 in 5 risk and at 16 weeks were told that our baby had an AVSD heart defect. This clinched it for having DS in my mind although we didn't go for any invasive testing. Initially I was so sure that we were keeping our baby and then exactly the same thoughts and doubts that you have been having crept in to my mind. Over a period of about 4 days i went in to a frenzy of research, reading and talking to parents, healthcare professional and associations to make damn sure that I fully understood the kind of life that i would be 'sentencing' my baby to having. By the end of my research and coupled with my gut feeling (yes yes I know), I reverted back to my original position of being 100% behind the pregnancy. Yes I did have the odd wobble but I knew that I couldn't terminate with the information that I had been given. I am not judging anyone who does terminate for ds by the way.

Anyway - DS was born almost 3 months ago and so far, he has just been like any other baby, just a better sleeper! He's our 3rd and we're so in love with the little chap. He has open heart surgery in the next couple of months and having worked in cardiac surgery, I feel rather more relaxed about it than if I hadn't!

There are quite a few appointments at the beginning becuase they get the gold service of the nhs - they check everything and are totally wonderful. The appointments don't go on for long though.

Please PM me if you would like to...

[eidsvold]

edy1 - put down the book and enjoy your baby!!! That was some of the best advice someone could give to me when we learned about dd1.
edy1 - dd1 was born with a complete AVSD and at 8 weeks old under went two open heart surgeries within 3 days. TO look at her now - you would not know unless you saw the scar. In fact her heart is just like a regular one now.

[Thomas359]

Does anyone feel guilty they've had a child with DS? reading all the posts, those that have children with DS go on and have a fulfuiling life,adoring their child, as any parent would which begs the question, why the high rates of termination?

[Notquitegrownup]

Bogsyripply, you must be devestated, but it is good to see you on here, as there are others who have been where you are, and who will understand exactly what you are going through.

In response to Thomas would assume that the high rates of termination are partly in response to the advice given by medical services. We have a nuchal scan which came back with a very high risk factor for ds2, 1:2, and I was repeatedly invited to book a termination, by the person doing the scan, by my midwife, and GP. Although the question was neutrally worded, the tone of voice, the fact that they kept asking, and the assumptions being made about the difficulties we would face, was quite overwhelming.

Talking to other parents (mainly online) of children who have downs syndrome, we decided not to terminate, and not to have further tests. I was already in love with the little bean I had seen on my neuchal scan and wanted him. It was not an easy time. We were fearful, and felt very ill prepared, but encouraged by the communities of parents we met, not least on MN.

In the end, our baby was born without ds, but I retain a sense of frustration that I felt at the lack of neutral support given by those who should be able to inform us, at this time.

Best wishes and thinking of you.

[eidsvold]

thomas - for some people it is fear of hte unkown, it is the negative and very gloomy predictions given to them by medical professionals. In fact I had a nuchal translucency screening with my third pregnancy because of a hear defect that had arisen in our family. I sat in a consulting room for 10 minutes prior to my nuchal translucency with a genetic counsellor who tried to tell me what it was like to raise a child with ds whilst my child with ds sat in the room with me!!!!!! Even more concern was the inaccurate and outdated information she was giving to me.

It is also fear of how that will impact on the family that is already here - siblings for example.

Statistically where people have some knowledge or experience of down syndrome they are almost 70 % more likely to continue the pregnancy.

[saintlyjimjams]

Interesting points Thomas & notquitegrownup. The medical profession has always been pretty useless with learning disabilities - can't be fixed. Yes raising a child with ld's adds some challenges but they forget to tell you it adds a bunch of good stuff as well. My son with severe LD's has definitely changed life for the better for our family although I suspect people looking in find that hard to believe as he is so far from society's idea of normal. Yes it's more challenging but it's also better. So far his impact on his siblings has been positive. Well I can't think of anything negative. He's had siblings for nearly a decade now so plenty of time for something to go wrong.

The main impact he's had is on my ability to work as there's no after school care for him - easy for his siblings. In the end I got round that by starting my own business so that has ended up being a blessing in disguise as well as I have discovered I prefer working for myself ( but probably wouldn't have done it unless it was necessary).

[eidsvold]

unlike saintly my dd1 does attend outside school hours care and I am working towards returning to teaching fulltime eventually and part time for now. I did return to work full time when she was one and worked for a year until we returned to Aus to live.

[saintlyjimjams]

Ah yes I should add I think it is MUCH easier to find out of school care for children with DS than those with DS1's condition. Usually children with DS can attend regular out of school clubs without much difficulty (DS1 can't - so that's why we have the problem).

[Spood]

really to everybody whatever your descision... My daughter is 4 weeks old and diagosed with downs syndrome. The first week was bad as she was in SCBU due to low blood sugar and although i was high risk at the triple test, being given a definate diagnosis is still very upsetting. She also has 2 holes in her heart and will need surgery. I was worried I would not love her or be embarrased when people asked why she has a feeding tube ( slow to suckle and runs out of energy whern feeding). One night in the hospital I watched her sleeping, her little chin and perfect lips gently moving in rythmn to her breathing, and I fell in love and became like a lioness - very protective!!! Four weeks on and she wriggles away, poos for England, gets annoyed at waiting for feeding and cries when she's lonely and wants a cuddle. She is very stubborn and amusing with lots of facial expressions. Really she's my baby with a future just as unknown as any other baby and yes I still cry sometimes. If I was to give any advice it would be take time to absorb everything and talk about your feelings good and bad with anyone who will listen. Keep your dreams realistic, but have dreams because you never know what anyone is capable of untill you see it for yourself xxx

[Molybdenum]

I would highly recommend this book:
Greater Expectations

[lalamumto3]

Hi
I have a daughter who is 14 and has DS. It was a great shock when she was born as she was undiagnosed, my NT scan had a probability of 1 in 3600. It took a while to get used to, she is my 2nd, and we now have 3 children.
I think it is very hard if you find out before they are born as you face difficult choices that we did not have.
Roll on 14 years.....
Our daughter quite simply brings us great joy, she is loved by her siblings and brings a lot of laughter into every day. This weekend she went to drama club, a disco and to the theatre. In half term she skied in France (and said that I slowed her down !!!!) Last week she did an art class after school.
Please feel free to PM me if you would like to know more or just chat.
Thinking of you