Help for baby with down's syndrome

[Onesheep]

Hello,

following blood screening I've been found to be high risk for Down's Syndrome - 1:47. I had an amnio the day before yesterday, and am waiting for the results. I'll be 18 weeks on Sunday.

We don't know what we would do, heart says one thing, head says another. While I wait I'm trying to get information together, that may be useful. Guess it's a way of filling time too!

What support is there for a baby with Down's Syndrome? Financial, and educational? Previously I had been intending to return to work after 6 months maternity leave, for financial reasons. Now I no longer know whether I will be able to do this, but am unsure whether there would still be nursery provision from such an early age, or whether there is any additional financial support.

Any advice would be gratefuly recieved

thanks

hello and congratulations on your pregnancy.

There are several posters here who have children with downs syndrome, Eidsvold, Thomcat, geekgirl I can try to put a call out for one of them to look at this thread and help you if possible?

Some of them found out after the birth that their babies had downs, but I know that eidsvold found out during her pregnancy that her dd not only had downs but also a life-threatening heart condition which was operated on soon after her birth iirc. I think she is now about eight or nine and doing well in mainstream school (she lives in aus though so might not be able to reply until later).

Just one thing though, this specific area is for parents whose dc do have special needs, if you are going to continue with your pregnancy then you will get a lot of help and support here from posters who have been where you are now and will continue to have been where you are at every stage of your baby's life.

But if you are going to terminate your pregnancy then it might be adviseable to request your thread be moved to the antenatal tests topic where again there are women who have made that decision, so that the posters on this board who have children with sn aren't faced with a thread about termination.

Good luck xx

congratulations on your preganancy.

Hello,

It really is advice on the practicalities of having a baby with down's syndrome that I'd like. Just feel like don't really know where to start! Down's Syndrome Association have been very helpful though

thanks for the info.

Hi, congratulations!!
All I can say is don't be wooed over by people's personal experiences. You don't know how it will progress until you are travelling down the road. If you are up for the challenge and maybe life to be another road go for it.
There will be financial support etc but everything is hard work and a fight. Hope I have not been too off putting, which is why at this stage I never tell people my persoanl experiences. I know I don't have a way with words either.
Having said all that I have a 9yo with downs among other issues, he's very hard work but I wouldn't change him for the world. I wouldn't know how life would be without him.
Take care and anything else just ask x

Hello!

what a worrying time for you! I have an 18 month old who has Down's syndrome. I am being completely and absolutely honest here when I say that he has been the easiest baby of the three boys I have, the best sleeper and I went back to work sooner than I did with any of the others ( I had planned to only have 6 months off - when he popped out I thought I would never be able to go back at all).

Riven is right, a baby is a baby is a baby. I didn't believe people when they told me that when my DS was born - but they were right.

It was definately hard to come to terms with but he is ACE!

please let us know if we can help in any way.

Hi!

I have a two year old ds who was diagnosed with DS after he was born. It was huge shock initially and I felt a little overwhelmed at first by all the dr's, nurses, the various tests and info been thrown at me. But we were very fortunate as ds was born with no major health problems and tbh I just wanted to get him home so we could get on with being a family! He was the most perfect baby ever.....slept loads between feeds, bf really well....really content!

Support wise we had the usual after he was born, midwife and HV, then we were referred to the childrens learning disability team who we saw every few weeks at home. I got lots of practical advice and support (how to claim DLA, activities to help with ds low muscle tone etc)

Ds now has a portage teacher who we see at home once a week who helps ds with his developmental goals along with a speech therapist who we see every 4-6 weeks.

Ds has attended a mainstream nursery since he was 6 months old and they have been amazing. He has a wonderful keyworker with whom we work very closely and ds has a ball there I'm also planning to send ds to the same local primary school that my older daughter attends.

Yes he has developmental delays and is not walking yet......but he can do SO SO much....he just takes a little longer to get there! He's just the same as many two year olds, full of mischief, very cheeky, very funny.....and prone to the odd toddler tantrum or two!!!

I'm just off on the school run now but just wanted to say that maybe you could contact your local DS group, talk to other mums who had a pre-natal diagnosis, my local group has been an invaluable source of support, especially in those early days

Take care!

I found out my baby had down's after an amnio he is now 20 months old and is no different than my other two at this stage he enjoys the same toys, groups and tv programmes that they did and although develomentally slower he is meeting his milestones and is a happy and very content little chap, like fizzy's DS he has also been the easiest of the three.

Things are great, we work and have had fantastic support so far. Life is hectic but no more so then anyone else that I know with 3 DC.
He did have heart surgery at 4 months due to a hole in the heart which was discovered at my 20 week scan . That has been the most difficult time so far but no major issues since then he now has a clean bill of health.

Good luck with your pregnancy whatever the outcome and for what it's worth I think you've done the right thing getting as much information on the condition as possible. If you do have to make a choice better that it is an informed one.

My daughter is 10 months old and has Downs Syndrome. On a developmental basis she is a little behind her peers, but not significantly (although I do know the gap will increase). She does have heart problems and has had surgery, but day to day she is just the same as any other baby - she enjoys books and songs, hates having her coat put on and loves her cot! We do have lots of professionals involved to help and support, but the majority are related to her medical needs. My DD is booked to start at a private nursery in September when I go back to work. There are nurseries out there that are happy to have children with SN, but sometimes you have to search a little bit more than normal.

Financially you should be entitled to some level of DLA - the Down's Syndrome Association have documents advising how to claim at different ages. I found this really helpful. They can be found here: www.downs-syndrome.org.uk/resources/publications/benefits.html

Also if you get child/working tax credits there is an additional element for having a child with sn.

Educationally a lot of children with DS go to mainstream schools, particularly for their primary years. Some go to special schools where their needs can be better met. Children with DS have very wide ranging levels of ability so at this stage you wouldn't be able to predict how much support your child might need.

I love my DD and wouldn't change her for the world, despite her difficulties. If I can help in any other way please contact me.

Hi,

I have two children who don't have ds, but I work with people who do.

I'm not sure if my post will be of any help!

Please don't look as ds as something wrong with a child- like the medical model of disability would like people to believe!

The people I support are the same as everyone they just sometimes need a little extra support and society has come a long way in helping people live ordinary lives!

Good luck x

I too work with a child with Downs Syndrome and he is amazing, yes he has his problems and obsticals to work on but he is 1 hell of a kid.

I was given a 1 in 5 risk result for downs syndrome, and was offered cvb, and amnio, I turned both down. as I was more worried about miscarriage than a baby with downs, so I was interested to read the opinions from the ladies on here with children who have downs, One thing I was wondering about is breast feeding, sorry if im being stupid, but is it as easy to breast feed a baby with downs syndrome?

hi onesheep, congratulations on your pregnancy
I have a dd2 with DS - she is a big girl of 9 now so the baby years are long ago for us now. Dd2 was born with a heart defect and had surgery at 7 weeks old. Her heart is perfectly fine now - as good as a normal one and she is a very active and healthy girl. When she was little she did have a fair few health problems and got poorly with chest infections quite frequently. The first few years is also the time when stuff like hearing problems, vision issues etc are diagnosed and dealt with - dd has a hearing loss but wears a fab hearing aid which means her hearing is virtually normal. She also wears glasses at school.
There was a lot of support when she was small - DS is such a known quantity, there is no hanging on for years for a diagnosis and referrals to speech therapy, physio, portage etc are automatic. Dd2 went to our local nursery and now attends the village primary with her two siblings. She has a full time teaching assistant and is very happy and settled there. She will be going to mainstream secondary school - there is one in our town that has a particularly good reputation for inclusion and many children with DS have gone there already so I am confident it will work out.
In terms of work, it has been tricky for me to be honest as we have no family nearby. In the first few years of dd2's life I was very focused on sorting out any health issues and taking her to lots of activites such as waterbabies, tumbletots etc., plus I had dd1 who is only 1.5 years older than dd2 so working outside the home would have been difficult anyway. Lots of people do it though and use childminders, nurseries and after-school clubs.
Financially, there are various disability benefits that are not means-tested. We get around £600 per month in benefits relating to dd2, plus a tax credit bonus for having a child with SN.

I don't think dd2 having DS affects our day to day life in particular. The only real restriction I can think of is that dd2 has low muscle tone so we can't go on really long walks (we like going walking) - so we stick to under 7K. Other than that, family life is pretty normal really. We are lucky in that dd2 is actually very reliable and sensible and she won't get up to any mischief on her own so it's not as though I have to keep an eye on her all the time.

I was extremely upset when we found out dd2 had DS - it was so utterly unexpected. But I can honestly say that having her is the best thing that has ever happened to me. She makes my heart soar every single day. She is kind, compassionate, helpful, funny and determined. She works so hard at everything she does. Her siblings love her very much and are fiercely proud and protective of her. I am an atheist, and I know it sounds really corny, but I do feel 'blessed' to have dd2 in my life - she is like a ray of sunshine.

effilump, I breastfed dd2 for 14 months. I was tandem feeding dd1 at the time too though which I suspect made it easier . Sometimes it can be hard to establish breastfeeding as babies with DS can have a weaker suck, and a pump would be useful then. There is a lot of information online about breastfeeding babies with DS if you need further information.

Thanks for the reply geekgirl.

My DS 3 has Downs Syndrome. He is 6 now.

People who say a baby is just a baby are right. I also agree that DS3 was a much easier baby than my other two (who were very easy anyway) and he slept through at night from the day he was born. He is still an excellent sleeper now and always has been, he goes straighht to sleep whenever we put him to bed, usually around 7pm.

My son attended nursery and a childminer whilst I worked when he was younger. He is obviously now at school, and we did decide on a special needs school for him as he is fairly developmentally delayed and I felt they could cater for his needs best. (eg. all the staff there can sign, as opposed to just the support worker he'd get in mainstream school)

I do get DLA at the highest rate for care, and we are just about to reapply for the mobility part, as he can walk but nowhere near to the extent of another six year old and he has behavioural issues whilst out, in that he doesn't understand danger or why he should always follow instructions etc.

All in all, I wouldn't change my son for the world. He is totally, totally wonderful. A right little character and a pleasure to be around, he has us in stitches every day as he has quite a sense of humour. His brothers love him and so do all of our friends.

My son did have heart surgery at 6 months old, but sailed through it and is fine now.

I can't pretend it isn't different to have a child with Downs, of course it is, but I can honestly say there is not one negative thing about it. It certainly hasn't made life noticably different to it would have been if he didn't have Downs, except without Downs he wouldn't be the little boy we all love so much.

Hi there,
Have just found this thread not having looked on the SN posts for a while. My 21 month old son has DS and it's actually nice to realise there are quite a few mumsnetters who do and I've never come across any of you before

This one is mainly for Effilump - do I take it you're currently pregnant and have a 1:5? I had a 1:6 for DS and a 1:4 for 'another chromosomal abnormality'. We too decided not to have any invasive tests due to risk of miscarriage, so again it's nice to know of someone else who has chosen that route. We had lots of extra scans and the consultant was lovely at looking for 'soft markers' as I just wanted to get to know my little one and gently come to terms with the fact that he did have DS (or one of the other abnormalities) and adjust to what might lay ahead.

Like lots of the replies above, he has in many ways been an easier baby than my daughter and breast feeding him was a doddle in comparison to DD, but maybe as I knew what I was in for! I went to the hospital armed with a breast pump, just in case, and he learned to take from me within a few days without me having the trauma of getting engorged and so on.

We did have an amnio really near the end of the pregnancy (36 weeks) when I knew that if it brought on labour, he would be as fully developed as possible, but I realised that I was going a bit stir crazy and got freaked out at the idea of going into labour still not knowing, especially if it was one of the other chromosomal abnormalities (Edwards or Patau's) that aren't generally compatible with life. I think by this time, though, we knew he almost definitely had DS from the soft markers. I actually cried with relief when the midwife called with the results and said that he did have Down's. At least he was going to live!! I was ecstatic, bizarrely enough.

Anyway, he's scrummy, a real tinker, hard work in his own way but not in a bad way! He is truly the light of my life and we all adore him.

I went back to work when he was 9 months as a teacher, but was already part-time. Nursery have been great with him and you can get heaps of support. Sometimes you have to know where to find it, so joining a local support group is good as you can pick people's brains about what to expect in the coming months or how to word DLA forms, what questions to ask at appointments and so on.

Anyway, good luck with the rest of your pregnancy Effilump (if I've understood correctly that you're pregnant now and haven't already had your baby!) and Onesheep I trust that you will feel able to make a choice that is right for you if necessary based on good information and supportive friends/ family. Having a termination is just as difficult in its own way and I think people can see it as the 'easy' option. There isn't always an easy option or obvious answer.

Having got several sets of friends who cannot have children of their own and are going through years of gruelling adoption processes or IVF, I think it's important to remember that we are all blessed to have children when there are so many people who can't have them and that no parents life is ever 'easy' even if we give birth to a seemingly perfect child. You only have to look at the other posts to realise that most of those mums would have been told all the way through their pregnancies what 'perfect' babies they were having as there were no physical abnormalities to be spotted on the scan. Believe me, my 'normal' child tests me to the limit some days, but I wouldn't be without either of them

Hope nobody is horrified by any of my thoughts or ramblings - hate the idea of ever offending anyone when I write as I know it can be such a sensitive issue.

xx

This has been such a useful thread to read. I've been looking mainly at the antenatal testing threads, which have been so helpful, too, but was delighted to find this one. I'm now about 23 weeks pregnant, having found out at about 17 weeks that I had 1/49 odds of having a baby with DS. Like you, Effilump, we refused the invasive diagnostic because we were more afraid of miscarriage. We knew that our baby was our baby, no matter what. In some ways it would be so much easier simply to know one way or the other though . . .Kizzyboo5, I was wondering if you had any more info on the late (36 week) amnio-- is the only risk that of early onset labour?

I'm so happy to have found this thread though, as I've reached the stage where I just want to learn as much about DS as possible, and all that it involves. I'm worried more about thirty years from now, then about the next ten years. As so many of you wisely say, a baby is a baby and a child is a child. But I'm terrified about having a child who needs care when I (and my husband, who is quite a bit older than I am) am not longer able to provide it.

Effilump, I hope you are enjoying this waiting game as much as I am. I love every kick and movement!

Onesheep, I really hope things work out for you, as our odds are so similar.

Thanks kizzyboo5 I am pregnant still, I was given the 1 in 5 for downs and refused further testing,because like you mainer I didnt want to risk loosing my baby, I did ask the specialist midwife about looking for soft markers at the 20wk scan, but she said they didnt look for them any more because they threw up a lot of false positives and led to more invasive testing. I havnt been offered anything actually, no extra scans, or checks. maybe thats a good thing, as it might lead to more worry! I've got my 20wk scan next week, and I am worried about it, but thats down to the awful experience I had with the sonographer at my 12wk scan.
I've also been toying with the idea of a later amnio too, just to know for certain.
mainer I am enjoying the baby moving about now,and looking forward to having him or her here, whatever the outcome.