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Do you know how much ill the baby with DS is going to be?

(13 Posts)
Onecutefox Fri 01-Dec-17 20:41:39

The amnio test showed the baby has DS. Is it possible with further tests, scans to find out if the baby is going to have any major health issues?
Just having so many thoughts going through my head.

emvy Fri 01-Dec-17 21:07:35

I think there are tests they might be able to do that show for physical difficulties e.g. Heart problems etc but in terms of how much they will struggle generally, no. I know very little about this though, I hope someone else will be able to shed more light on this for you. I'm assuming you'll have been referred to a consultant who will be overseeing things now? I'm sure they will be able to answer any questions you might have and will have answered them all many times before. I'd recommend getting in touch with them. I wish you all the best x

Onecutefox Fri 01-Dec-17 21:21:34

Thank you emvy x. I was only told of the result and to discuss it with my Dh. Then come back and they may do a more detailed scan if we want to. I don't know how much more detailed the scan is going to be and how much more different from the previous one.
It's really hard to take it. On one hand you know children with DS can lead a pretty normal life with some limitations but on the other hand they can be totally dependant on the adult having all sorts of health issues.
Just when I started feeling it moving I have to make the decision. It's so heartbreaking. I wish wasn't that sensitive.

dkb15164 Fri 01-Dec-17 22:29:43

I would definitely go back for a more detailed scan. You can ask on the Down syndrome forum what other mums have experienced with it and their finding out stories. I will however say that through my teenage years a baby sat a lovely Down syndrome girl and her sister from the age she was 7 till 12 and I wish other people in the world could be as happy as her for even a second. The amount of joy this child could brings your life is unbelievable but the amount of worry this child could bring your life is actually on the same level as most other parents as every parent out there worries about their kid for more and for longer than they should. I think preparing for health concerns will be your big focus point - will there be any health conditions that make their life unbearable? Etc are the questions that you want to be asking. There's also a huge support community for Down syndrome affected families who have BBQs, go on walks together and arrange cinema trips with scheduled bathroom breaks if you want to go along and get some advice from the parents. You will know in your heart what is right for you and your baby.

Onecutefox Fri 01-Dec-17 22:40:49

Thank you Dkb. I will have a look at DS forum.
I worry that if I make a decision to terminate how am I going to cope? What the baby arrives alive? I think I would have asked the midwife to make sure I don't see it. Gosh, I wish I had known about it earlier when I still couldn't feel it moving.
My Dh thinks we can cope but I think he doesn't realise how serious it can be.

dkb15164 Fri 01-Dec-17 23:28:36

This article might be of help to you -'s-syndrome-~-continuing-your-pregnancy.aspx

Read it all the way through as there is definitely some good advice for if you decide to continue with the pregnancy. My partner was the same when I found out I was pregnant at 19 while at university - he was a few years older and he was very much like "oh we can handle it, no bother". It wasn't until later on that he admitted he was acting really calm so as not to worry me, inside he apparently felt somewhat terrified as well. Don't feel bad if you need to have a cry either, hormones run high during pregnancy and being able to let it out by yourself or with a close friend/family member that you can trust is a good idea. If there's one excuse to cry, it's during pregnancy. I've cried while pregnant because my partner cut a slice of pizza too big for me: crying about worrying about your baby doesn't mean that your a bad mum or that you won't love them any less with Down syndrome. Again, remember that a lot of what you see in the media makes out Down syndrome to be worse than it is. There's a lot of college courses available to certain levels of Down syndrome to allow them to get into the workforce and support themselves. The NHS has a whole range of community support people to help and advice you as well - there's even special counsellors in some areas to help you deal with the news. x

elliejjtiny Sat 02-Dec-17 00:14:11

How many weeks pregnant are you? Have you had your 20 week scan yet? I have a 4 year old who had part of his disability picked up at my 20 week scan so I had the detailed scan that you will have and probably similar care during pregnancy too. The detailed scan was similar to my 20 week one but done by the consultant obstetrician who specializes in unborn babies who have "abnormalities". They will be having a closer look for problems that are particularly common in people who have downs syndrome. My baby needed an operation when he was 6 months old and we were able to meet the surgeon while I was still pregnant and ask questions which was really reassuring although a bit surreal.

curliegirlie Sat 02-Dec-17 00:24:55

Congratulations Onecutefox - you’ve just won the lottery! Down’s Syndrome is a slightly different journey, but not one to fear.

As PPs have said, extra scans will focus on the problems that can often be associated with Down’s, such as heart and bowel issues. However, not all children with Down’s will have medical problems. My DD, now 2, was diagnosed postnatally (we’d been given odds of 1 in 1900, so it was quite a shock) and is absolutely perfect, no health issues whatsoever, other than a fairly continuously stuffy nose this time of year! She crawls, coasts the furniture and is getting very strong on her feet now. It won’t be long until she’s independently standing and walking. She has around 70 Makaton signs and a handful of words! I couldn’t be prouder of her. And her little friends who have had heart surgery etc. are also doing really well. Undoubtedly tough times, but they all got through it.

We get good support, both from the NHS (physio, speech and language therapy, OT, portage) and through a local charity which provides specialist weekly speech therapy and general support. We have met some brilliant families through our DD.

Do have a look at the Down’s Syndrome Association website- they have fab resources for expectant and new parents and is great too. Also, blogs like Don’t Be Sorry are great for sharing what everyday life for a family with a child with Down’s Syndrome is actually like. If you’re on Facebook I’d really recommend joining the Future of Down’s group - a brilliantly supportive parents network, where we all share all our proud moments and challenges.

Good luck 💐

curliegirlie Sat 02-Dec-17 00:40:53

Here’s my DD!

Apileofballyhoo Sat 02-Dec-17 00:47:30

She's so gorgeous, curlie!

Bellamuerte Sat 02-Dec-17 00:54:04

My aunt has DS and needs 24/7 care. She has heart problems and autoimmune diseases, can't walk or speak and is incontinent. Her brothers and sisters have spent half a century changing her nappies. DS is a spectrum disorder so you can't know in advance how badly your child will be affected. You have to be sure you can cope with the worst case scenario. I've seen how bad it can be and personally wouldn't take the risk.

Onecutefox Sat 02-Dec-17 08:55:04

Thank you everyone and curlie, your little girl is gorgeous.
I am 17 weeks and the baby already showed problems in the scan (water around the lung and heart, and another problem). The water is pushing on the lung and still so many weeks to go.
Unfortunately, I wouldn't call it winning a lottery. You only win a lottery if the child is going to have no major health issues. Bella's aunt is an example. There are a few schools in my county for children with learning difficulties. Many children with DS need around the clock care. You don't want you child to suffer. It's a very difficult choice. On Monday I am going to arrange the detailed scan and from then on we will see what to do. I spent half a night crying today. It's really hard to take in.
Thank you everyone for your messages and support xxx

therealposieparker Sat 02-Dec-17 08:57:46

You may want to seek alternative advice on other options too. There's no shame in not continuing at this point either. x

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