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Down's Syndrome

Hi all,

I gave birth to a beautiful baby girl 2 weeks ago and as soon as she was born I questioned if she had Down's Syndrome. The midwife wasn't sure so asked a doctor to take a look, who was also non commital so off we went to the post natal ward. That evening, she stopped breathing and had to be given oxygen and taken to special care. It was whilst we were in special care that Down's Syndrome was raised and it was decided that a blood test would be done to confirm this.

As the test was done on a Friday we had to wait till the following Monday to get the results. Although, I knew my daughter had Down's Syndrome it was the longest weekend ever. Monday came and it was confirmed what we already thought, that my daughter has Down's Syndrome.

This came as a huge shock to both me and my husband especially as I'd had the nuchal fold screening test which came back as a 1:20000 chance. She remained in special care, as she had feeding issues and a few breathing problems.

We were just getting her heads around the Down's Syndrome when they dropped the bombshell that she also has a serious heart condition. They've told us that 40-50% of Down's Syndrome children have heart conditions of which 15-20% have a complete AVSD, the condition my daughter has. This news was devastating to us and we are finding it hard to come to terms with, especially as she will have to have surgery at about 3mths old.

I just wondered if anyone had any similar experiences that they could share with me.



  • Hiya,

    First and foremost - CONGRATULATIONS! You have joined a very exclusive club!

    My little boy George will be 3 in April. He was diagnosed with DS at approximately 5 hours old and this was confirmed when he was about 4 days old after a blood test. He spent the first 10 days in SCBU as he was only 4lbs 2oz at full term, dodgy placenta thanks to the extra chromosome.

    We have been very fortunate in that he is in the 50% not to have a heart condition, and have got away with only an underactive thyroid - but there is still the round of eye/ ear check ups every 6 months and seeing the paediatrician - unavoidable, but comforting to know that he is being kept an eye on!

    I know what a massive shock it is - we hadn't had any of the pre-natal tests (not even the blood test), and as I was only 28 at the time we thought we were invincible! However, I can honestly say that having George - and the Down's syndrome - has been the best thing that has ever happened to us. Yes, things do take a bit longer, but there is SO much support out there - our social life has increased tenfold since he arrived!

    It can be quite disheartening as they get older when friends children start reaching all their milestones - but it will mean so much when your little one does that after a while you really won't care - and, as people almost don't expect a child with DS to do this, that or the other, there is no pressure - if they're not walking by 18 months, who gives a stuff??? They'll do it when they're ready! George was walking at 20 months and now he's a proper boy when it comes to climbing, exploring, investigating etc!!!

    Make sure you look in to and get involved in any local groups for children with additional needs - we've been having free swimming lessons at a local special school since George was 5 months old, and now he can swim/doggy paddle a width with his arm bands on and has started swimming with a float too! It is really helpful to meet parents with older children with DS - then you can pick their brains on schooling, funding to support the child going to Brownies and things like that!! There is SO much out there if you go and find it.

    Probably the scariest thing is not knowing what the future will hold - we're coming up to the point of deciding on schooling and things. George goes to a local 2-18 special school one day a week (in his little uniform - CUTE!!)but we're thinking mainstream since he is at the milder end when it comes to learning delay/development. Use other people and their experience, you are SO not on your own! Try not to look too far ahead - and I think that you are going to be amazed by what your little one will be able to do. Like with any child, you get out what you put in.

    And make sure you watch 'Something Special' on CBeebies - brilliant programme that teaches makaton sign language, and ALL children love Mr Tumble that is on there. There are lots of 'special' children on there too!

    Will finish my waffle (!) with a great quote that I heard recently - "having a child with Down's syndrome is like taking the scenic route - it takes a little longer, but it's SO worth it when you get there!"

    Take care and we're here if you need us for any tips/advice!

    Sarah x
  • Thanks ladies. It's good to hear how positive you are.

    If I'm being totally honest I think I'm kind of grieving for the daughter I thought I would have. I don't love my daughter any less because she has DS, but its new and scary to me. The future for her scares me too. I know she will have choices but these choices won't be the same choices that my dd has. I suppose at the moment I still want to be in Italy, but with time, I'm hoping I can learn more about Holland.

    We have an appointment on Tuesday with the heart specialist so we should get a few more answers then.

    Did either of you have any feeding issues with your children? Freya doesn't wake for feeds and sleeps more or less all day (we wake her for her feeds) and when she does feed gets tired very quickly and is very messy.
  • Hiya,

    Don't worry about feeling as though you are grieving - that's perfectly normal. I remember waking up the morning after I'd had George and the first thing that I thought was "Oh my God, he'll never go to University!" - seems silly now to think that of a child that was barely a day old! And who is to say that had I had a child without DS that they would've gone anyway?!! And who knows - it's not unheard of for a person with DS to go that far!

    I don't know if you've been on the website of the Down's Syndrome Association, but they have a really good pamphlet for new parents that you can download - and its so scarily accurate when it talks about how you are feeling!

    As for the feeding, George would never latch on so I couldn't breastfeed - but I did express for 8 weeks (then went on to SMA) and bottle fed him. Also, whenever we tried to feed him while holding him (in a sort of cuddle!), he would just nod off - so we started lying him on one of those semi-circular cushions facing us - so no contact as such, but we never looked back - and he was wolfing 7oz bottles by the time we started weaning him at 20 weeks. Once he started on 'proper' food, he very quickly dropped all bottles except the morning and night one, and was on 3 meals a day. He did suffer quite badly from reflux until he was 18 months old, and even now has the occasional 'spit' - although he cleans it up himself image)That was because of the poor muscle tone, and the muscle that keeps food down simply took a while to strengthen and be able to cope with what he was eating.

    He has been fine in terms of learning how to use a cup and eats very confidently with a fork and spoon, as per any child his age. He does have problems with some textures (e.g. bread) - this is because of a sensitivity to certain textures, and also the fact that they tend to have a smaller mouth cavity than other children - and so their tongue can sometimes get in the way. He has taught himself how to overcome this though, bless him, especially where biscuits/cakes are involved!!!!!!!!

    You will probably find that Freya is very stubborn - this is a well know trait with people with DS - and that will possibly make eating an issue at some point! We have certainly had this with George. However, we have been advised - and have indeed found - that this behaviour should be dealt with in the same way, as with any other child... and whatever way you tackle it, you have to be as consistent as you would with anyone else. They soon learn - these children are a LOT brighter than historical stereotypes would have you believe!

    And to echo BeauB (hello to you too - don't think we've chatted before!) we are here if you want us - we live in Gloucestershire, so don't know if you are anywhere nearby!

    Sarah x
  • Hi ladies

    I've been feeling much more positive that last few days.

    Freya is on a high calorie milk and in the last few days has been taking 70ml every 4hrs, without much mess, so very pleased with her feeding. She even took 100ml in one feed yesterday which amazed me. I still need to wake her but when I do she is usually happy to take her feeds now which is an improvement.

    Unfortunately, I do think she has started with reflux. She keeps screaming in pain arching her back and throwing her head back. Sometimes she is sick (through mouth and nose) but not always. I've got an appointment with the heart specialist next week so may mention it then. My concern is that if they prescribe a milk thickener, if she will have the energy to suck it through the teet.

    I live in Yorkshire.
  • Hi BeauB

    Freya will also be having her op in Leeds. Not sure when it is but when they did the scan they said about 3mths.
  • Hello

    Sorry to but in - I have no experience of Downs Syndrome but I am a mummy of a heart child so I may be able to help there! I also visit a forum which is a charity with a forum/message board set up to support families of children with heart conditions and there is loads of lovely ladies over there who will be able to offer support and advice too. Many who will have experience of the same condition (there is actually a list of members/conditions so you can get in touch with people). xx
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