Please share experiences of bringing up a child with Downs Syndrome

[FlossieF]

Having suffered three miscarriages, I'm pregnant with what I hope will be my first child, and I've just had my 20 week scan.

Unfortunately the scan showed that the baby has bilateral talipes, and further detailed scan revealed certain markers for chromosomal abnormalities, which means that the risk of the baby having a chromosomal abnormality is 1 in 10.

I didn't pay to have a nuchal scan or take the triple test, because we'd decided that we couldn't contemplating aborting a baby just because it has Downs, and having had three miscarriages I didn't want to be put in the position of having to make a decision whether or not to have an invasive test if the odds were "bad". But after all that, I've ended up in that position anyway, and have decided to go ahead with the amnio.

My main reason for having the amnio is (hopefully) to rule out the "incompatible with life" defects - I can't face going ahead with the pregnancy knowing that will be the eventual outcome, and I still do not believe I could bring myself to terminate the pregnancy if the Downs result is positive.

The point of the post - yes I'm getting there eventually - is to hear some first hand experiences in bringing up a child with Downs. Hopefully these will reassure me that it is not the end of the world, and it is something I will be able to cope with.

At the moment, tbh, it does feel like the end of the world. I've been wondering how I'll cope with my demanding job and a "normal" child. Is it possible to maintain a career and bring up a child with DS? Apologies for my ignorance, but I know no-one who has had to face this situation.

So many people on the ante-natal threads I've read over the course of my four pregnancies to date have the nuchal scan, presumably because they know they would abort a baby with DS, it makes me feel odd and/or deluded for not contemplating that. Hopefully here I'll hear from some people who have a different view.

im bumping for you but have no advise myself my friend has little boy who is adoreable and she wouldnt change him for the world he has more challanges in his development as its at a slower rate but his still reaching the milestones and is simply gorgeous

Flossie - I'm in a tearing hurry, but
Search posts by Thomcat, who posts wonderful stuff about her darling dd, or Eidsvold whose dd has just started mainstream secondary school (I think).

Also - there are a few of us with experiene of children with talipes - have a look at the STEPS website, and research ponsetti treatment.

Is the talipes the 'soft marker' for Downs Syndrome? bear in mind that 'soft marker' basically means unproven possibly suspected co-incidental link. Was the other thing detected on the scan an echogenic locii (or something)? Again, extremely common in babies without a chromosomal condition - and only a soft marker.

Congratulations on your pregnancy - your baby will be a little marvel whether he / she happens to have Downs Sydrome or not

eidsvold's dd has started mainstream primary school.

There are quite a few parents on here with experience of DS.
I was talking to a colleague at work yesterday - she has a grown up son with DS- and she was saying what a good quality of life he has. He lives in supported accommodation, has some jobs, is probably getting married. Another teenager I know with DS is taking 9 GSCE's.

It's a big spectrum and having a disabled child makes life interesting. TBH when the baby is born you won't care if they have DS

Good luck with the amnio although I feel I have to tell you (rather than you find out later) that for every 3 babies terminated because of an amnio 2 healthy babies are miscarried. If you're wanting to rule out very serious abnormalities (such as trisomy 13 or 18) you might be able to get reasuring info from a detailed level 4 (I think they're called) scan- although of course it wouldn't be a definite. It might be worth asking about if you wouldn't terminate for DS as obviously amnio does introduce a miscarriage risk (however small).

Hi I also don't have any experience of Downs, although my son has a chromosmal abnormality which presents very similarly to Downs. He has di-georges syndrome and actually presented very similarly at my 20 week scan, although he only had two soft markers and then they only recommended further investigations if there were three. (Was 5 years ago, so don't know how it works now.)

DS2 has a hearing impairment, severe speech delay, comprimised immune system, hypotonia and lots of other stuff that is too long to mention. However he is a happy, confident little boy. He has just started mainstream school and much to everyones surprise (except mine and DH's) is doing really well. The same as the other people on here, I truly wouldn't change a thing, (except his physical suffering but even then children have wonderful coping mechanism's and we are very grateful to have him.)the syndrome is just one part of him, his personality shines through beyond his disabilities.

Congratulations on your pregnancy, I hope you continue to do well and that your baby will bring you much joy.

Thank you all for your messages of support. I'm in floods of tears (again) but not feeling quite so desperate as earlier today.

There are three markers, in addition to the talipes, which all adds up in my mind, to there definitely being a problem. I know that is technically not true, but after everything, I've lost the ability to be optimistic.

The risk of miscarriage from the amnio is obviously a worry - I won't be getting much sleep tonight. Unfortunately, now I know that the risk of abnormality is so high (we're not talking about the results of 1 in 100 or 200 chance people are presented with as bad odds after a nuchal scan, after all) I think I need to know for definite one way or the other so I can prepare myself, or enjoy the rest of the pregnancy without the additional worry if the results are normal.

Will let you know how it goes.

Hi Flossie,

I am so sorry to hear about your scan and hoping that you have the strength to make any decisions you have to make in the near future. I had a high risk nuchal scan (1 in 63) of DS and I opted for a CVS. I then had to repeat the CVS as they mucked up the first one (very rare I was told, they got too much of my cells and not the baby's). The two weeks from having the scan to doing the tests and then getting the results, I can honestly said were the worst two weeks of our lives so I want to send big hugs to you. You never prepare yourself for the bad odds (I even went to the 12-week scan myself thinking that it was just a standard scan) and when you get news like that, it knocks you for six. My point of view at that time is that I would terminate for DS without a doubt. The results were that we were going to have a healthy baby. My DS is now a very healthy 9-month-old boy. At that time, I felt that next time (if I were to be blessed with two children) I would not have any scans that would give me odds and that I could go straight to a CVS / amnio so I know for sure.

However, I now look at my wonderfully gorgeous and funny DS and I shudder to think I could have lost him. And now I am a parent I just don't know if I could ever bring myself to put my unborn child at that sort of risk. It's so difficult when you are put in that position cos you are in shock and you just cannot think straight. I still struggle every day with thoughts of what I would have done if the results had been different and what I would do in my next pregnancy, which is why I find myself lurking on the special needs board. I know this is easy for me to say as I have a healthy DS but I genuinely am interested in what other people have to say about bringing up a child with DS in order to better inform me next time in my decision-making process so I think you have done a very wise thing and I know there will be lots of people posting their support to you very soon. Please take care of yourself. How is your DH taking it? How does he feel? I'm also including some recent articles in the news about DS.

Many keeping babies with Down's
I can't imagine her any other way

Keep us posted.

Ax

Hi Flossie, my DC doesn't have DS but we go to a sn therapy group where 3 of our friends do. I have to say they are the most gorgeous, funny, sweetest little children and are just lovely to be with. Please don't be sad, your LO will bring you loads of joy and happiness and he or she will make you the proudest mummy in the world....... many times. xxxx

bumping for you. My dd has severe cerebral palsy but we hang out with a friend who has adopted several children with DS. If your little one does have DS first and foremost they are a BABY.

Hi Flossie. It must be a hard time for you. Agree with nmcoffee. Your baby will be YOUR baby and you will love them so much. It will be ok.

Hi Flossie

I have a 21 month old son with Down Syndrome and talipes but did not know until he was born. I will be honest and say that it has been very difficult to come to terms with (and some days I'm still not sure I have) and the first 12 months were incredibly hard.

However, my son amazes me every single day,his smile lights up his own face and the best thing in the world is seeing him first thing in the morning. Yes he is developmentally delayed, still not walking and only just crawling but he can sign and say a few words and knows exactly how to get what it wants and use his smile the best way he can.

With regards to the talipes my son was in plaster for about 6 weeks and then in shoes and we had to perform exercises on him. To be honest for us the talipes were not a problem although the car parking charge at the hospital twice a week was a stickler!

I cannot tell you how you will feel or what life might be like only how it is for me. I did give up work to look after my son but i had the lure of a redunancy pay and didn't enjoy it that much anyway so its possible that downs or not I would have taken this route. Everyday is a challenge and different to how i thought it was going to be but very rewarding.

I hope this has helped a bit.

Hi Flossie

Ohh sorry I've only just seen this and am on my way to bed, just want you to know I've seen it and I'll be back when I'm not yawmning my head off!

Just so you know, I have a 7 yr old daughter, Lottie, who has Down's syndrome.

I'll come back and talk to you more tomorrow.

TC x

Hi Flossie and congratulations on your prgnancy.

At 22 weeks my DD had markers for Edwards syndrome. Her amnio was clear but I then had to undergo a whole series of detailed scans (one was even a MRI scan) to determine whether her brain had formed properly. I got a lot of negativity from the doctors doing the testing, with dire warnings about severe developmental delays and possible chromosone issues undetected by the (relatively crude) scanning performed in utero.

Nowadays, DD is a happy 2 year-old. She does have developmental delay, but it is just a part of her, and not all of her, if you see what I mean. Yes, she sees lots of health professionals, but she is just the cutest and most loving darling girl, with a huge smile, a mad mop of blonde hair, and a way of seeing the world and learning from it that will always be unique to her.

With hindsight, I'm not sure I should have agreed to all these tests. It made for a very stressful pregnancy indeed and by the time DD was born I was exhausted. I wasn't really sure I had a choice though--it's only afterwards that I learned I could have talked it through with a midwife, or with a helpful charity called ARC (antenatal results and choices) which you might already know about.

Stay strong, and keep posting!

Well, we've finally found the end of dp's seemingly endless optimism. Throughout all the miscarriages (even the first one which was a two month long nightmare of failed medical management, three ERPCs and an infection) he remained a tower of strength and adamant that everything will be alright in the end. This, apparently, is the final straw, and he looked absolutely shattered last night.

Having been dead set against having a nuchal scan or the triple test, I think the reality of having a child with a learning disability is now hitting home, and he is not sure if he could cope with this.

I went through all sorts of agonies yesterday about whether or not to go through with amnio, but dp wants to know, and now I know how uncertain he is, I need to know even more than before. If he may not stick around to look after a DS child, I figure the sooner I get used to that idea, and figure out how to cope the better.

Still, I cheered up a bit when a rang up a local nursery I know has an excellent reputation, and when I asked whether they take children with DS the lady I spoke to didn't bat an eyelid, and said yes without hesitation. Made it seem like not such a big deal, which is exactly what I need to hear.

Cursed scans - never has the expression "ignorance is bliss" been more relevant.

Do be aware that to (men especially) a mythical not yet born child with DS is totally different from a holding in your arms, this is my baby that needs me baby with DS.

You're right, of course, and DS or not, no-one has a clue what it feels like to have a child until it actually happens.

To all of you who've shared their experiences of having a child with DS or other similar condition - thank you. Hearing such positive stories is just what I need. I just hope that, if it comes to it, I can cope as well as you all have.

Hi

I don't post here very often but do read the boards every week. I have a DD with DS who is now 3 and half. I won't pretend that it was easy at the start but 3 years on life is good. She went to day nursery from 10 months with no problems at all and now goes to our local preschool.

Please feel free to look at her website if you think that it may help www.hallsplace.co.uk there is a piece on there that was written by my husband after Isla was born.

Emma

What a lovely website ems7, your girls are gorgeous.

My little brother has DS - he is (a not so little) 24 years old today! Here he is.

Flossie - when DS was shown at the scan to have soft markers (talipes and ecogenic focii), DP and I had the same difference of feeling about the potential future.

Togther we did some research - and although I felt positive, anyway, about a baby with DS, I still learned new things, and DP was astounded! We both had a very outdated view of DS.
In the ned we had amnio because they scared us to death a out other trisomies, and it was confirmed that DS did not have a chromosomal condtion.

However, (very unusually...do not worry about this for yourself!) he turned out to have a far more complicated leg, with talipes as the minor part of that! But DP has been completely staunch in caring for him and is besotted.

Jimjams is right about the difference.

Hi Flossie

I'm at work so short on time but until I get home tonight and have more time have a look at this wonderful article.
It just massivley sums it all up.

I am not a saint, I'm just a parent

It's basically BANG ON!

I can't tell you what it's like to have a child with Down's syndrome, I have no idea. I can tell you what it's like to have a daughter like Charlotte, who happens to have Down's syndrome though!

I have 3 children. Lottie is very nearly 7, Eve is very nearly 3, and Sadie is nearly 15 months. They are all great, all hard work. One of them happens to have Down's syndrome. She doesn't get any special treatment, she's just one ofthe family. We miht have to ask her more than once to come and put her coat on to get to school. We might have to wait a bit longer for her to get up the stairs for bed, we might have to help her do her buttons up still, other than that, she's just 1 of our 3 wonderful gilrs.
Her younger sister Eve helps her take her coat and shoes off after school which Lottie thinks is fab. she just sticks her foot out while Eve takes her shoe off and then says 'Oh well done Eve, well done, fank you Eve, fank you'!

Charlotte gives back so much more than I can ever put in. All my kids do. Amnd I love them all unconditionally, always will, no matter what happens, that's what being a mum means isn't it. I don't love Charlotte less becasue she has Down's syndrome, in fact, truth be told, and don't tell any of my children I said this, in some ways I might love her a little bit more because of it!

I'll be back to talk more, but for now all I want to say is having a child with Down's syndrome REALLY isn't a huge deal.

When Lottie was born and everyone was all sad and worried about me etc and I had stopped crying I then sat back and thought 'shit, my world has ended, everything is about to come crashing in around me, I'll never get through this, it's terrrible' and I waited for the world to crash in around my ears. I waited, and I waited. And while I was waiting I fell in love. Here was this little, beautiful, perfect little angel of a child who slept through, was breastfeeding from me, holding my finger, smiling, doing all the things babies do. And I suddenly realised that the world wasn't gping to come crashing down around me. Why would it? I ws a mum. I had a beautiful baby girl. Here she was, in my arms, and what ws so abd about anything? And I realised everything was going to be ok. And it is. It's not always easy, no-one ever said it would be. But nothing ever happens that you can't deal with but they happen gradulaly over time and it's just a natural part of your life that you deal with without really thinking about it or questioning it.

More later, work calls.

TC x

My son suffered severe brain damage at two weeks.I have always worked full time.There was no DLA or support 20 years ago.
My son has been the best and worst thing that happened to me.He has enriched my Life beyond measure and I owe him so much.

I agree with jimjams about men and babies. My husband really struggled with the idea of having any baby when I was pregnant with my daughter. We were too young, had no money etc. She has severe learning difficulties although we had no idea that she would have problems during my pregnancy. I had bleeding and was just so worried about losing her.

It really did change when she was born and he is a great father.

Hi Floss,
My story is a bit different in that I did have a 'perfect' child. He was seriously ill at 2 days old and we were told we would lose him. Thankfully the little fighter proved everyone wrong and survived. He is severely brain damaged but at 5 months old, we do not know what that means for him. He has tried so hard, he smiles and laughs, can hold his head up and 'stand' - all things they told us he would never do.
He has suffered a big set back recently as he is having infantile spasms, which require quite aggressive treatment and its making him very upset.

Though I would give anything to take it all away from him - I honestly wouldn't change him for the world. He is my son and I am filled with pride about all he has achieved, and his courage humbles me.
He is wonderful, I am so glad to have him in my life, and, despite all his problems, no-one will convince me that he is anything other than perfect.

Had I had any idea that this could have happened (except the normal pregnancy paranoia) I would have doubted that I could cope. I would have been terrified. But, for me, coping with life with his problems is a piece of piss compared to the idea of life without him. I've gained far more than I could ever lose.

I know this doesn't compare at all with your situation, just wanted to let you know that what all the others say is true - all you'll see is your baby. Nothing can compare to it.
Trust yourself and DP and very good luck xx

TC, that is a lovely post.

Your right about waiting for the world to come crashing in, DS2 was 4 when we got his official diagnosis of di-georges. It was this time and last year and we were crushed. Completely. Last Christmas is a bit of blur for me but then early in the new year I realised that this was the same child I had loved, cared for etc for four years, he now just had a name for all of his quirkiness and a reason for his ill health. The world crashing in never came.

He has totally changed my view on all disabilities, not just the ones that affect him, in terms of being able to have an enriched life. The same goes for my DH as well, to be honest he probably struggled more than myself in the very early days but again he got through it and our lives are good.

Whilst the baby stage was very, very tough had he had his diagnosis as a baby many of his problems would have been better managed.

Hi Flossie
When I was pg, my DH couldn't get his head around the idea that DD might have learning difficulties, either. It was just too abstract for him and he feared bonding with her in case she didn't live. Once she was born, though, and had survived the first few weeks in hospital, he related to her as not DD with a pile of problems, but a whole little person, with her own quirks and strengths...