I would love to learn more about having a child with Down's Syndrome

[BrownPaperandString]

We have just been told that we have a 1 in 5 chance of our baby having DS.

We aren't going to go for a CVS/amnio as we wouldn't terminate.

We would love to learn more about what it's like having a child with Down's Syndrome to prepare ourselves really.

I apologise if my question has been phrased really badly in any way - it's my ignorance.

Thank you in advance.

Hi. I had my first baby on june 28th. I'm 44 years old and I knew i was at a high risk of downs and I did not have the test done for the same reason, I would not have terminated. She IS downs. All I can do is tell you of my experiance so far bearing in mind she is six weeks old. And also I don't know what your healthcare is like where you are. We have had loads of hospital appointments with various departments and consultants and people all within a very short space of time. if this happens to you be warned it can get a little overwhelming and a little confusing. I am seriously sleep deprived as I have a partner who is damned useless and won't help me unless I practically beg, and I am recovering from an emergency c-section as well. Everyone has been very reassuring and helpful. She makes an awful lot of noise at night which four consultants have said is down to her floppy neck and under developed windpipe (she was four weeks early). I have been told not to worry about it so many times but I mentioned it again last weeek and said that it was also stopping me sleeping between night feeds. The consultant was wonderful and said for my own peace of mind, my health and my well being they will refer her for more tests. She need not have done that due to so many people telling me the same thing.

Anyway. Her heart is fine, she passed her hearing test, she wriggles like nothing on earth, screams the place down when she feels like it and eats like a horse. Pretty much the same as any other baby! Her developement is likely to be slower, when you get your red book and if baby is downs you might get a special section put in it for a downs child. The downs syndrome association has wonderful information available too. Now when the blood test confirmed she was downs I took it very badly. Make sure you talk to someone. I was in hospital for nine days after she was born ( we had jaundice and low platelet levels to deal with as well) I felt I had let her down, I hadn't been able to give birth to her normally, I had not been able to carry on with breastfeeding and now the downs. You have all these ideas of the 'perfect' baby, what you want them to do in life, how you want them to be. Then you realise that all that may have to be re thought. But as a consultant said, there isn't one baby born that he can ever make garantees with. The healthiest of babies can end up having learning difficulties later on in life. Just remember that no matter what, you would not have aborted him/her. The test results take a few days, but even if your baby is downs he/she is still the same baby you carried and gave birth to. I talk to my baby all the time, I have been reading to her since she was two days old and I will continue to push her as hard as i can.

By the way. Do not be afraid to ask questions at your appointments with anyone. There is no such thing as a silly question. If something is bothering you then it needs to be talked about. And if I could have a second child - at 44 I am not sure that is wise with one downs child already - I still would not have the test and I would not do anything differently. If I could have this pregnancy over again I would not change anything. Just remember one thing.
DOWNS SYNDROME IS NOT YOUR FAULT. Do not blame yourself, try not to go on a guilt trip. You have done nothing wrong.

Brownpaper just remember no matter what happens "you can do this". That's what I tell myself everyday. My DS has a syndrome which means he has many developmental delays and probs a bit worse than downs, however you take each day as it comes and try had focus on the positive. I'm not going to lie, it is a strain on your marriage and your sanity but for whatever reason us mummies (& daddies) were chosen to have these special little people who make you focus on the things that really matter in life..LOVE.
I know a couple of downs babies and they are all fantastic, really not that much behind other babies i.e sitting at 6-9 months and crawling within 12-14 months, eating finger foods at 6-9 months. Another bit of advice is once you know what your child has, park the label they have been given and try and see past that. At the beginning it can be difficult with a downs baby due to their facial features but as you get to know your baby and they develop a personality you look past the features and "label". Also "normal" babies only feed and sleep for the first couple of months and it can seem relentless whether they have a disability or not.
You'll get lots of support from all the mumsnetters I'm sure.
When are you due?

Hi Brownpaperand String, I have a daughter with Down's who is 9. she started in a mixed special needs/mainstream nursery, then went to mainstream school from 4-8 yrs old, and now is at a special needs school very local to us. She manages to accomplish so many things, eventually. I wouldn't change her, she has a fantastic personality, but of course it is challenging bringing her up, especially as I am now a single parent. She had a successful heart op at 3 months and is now fit as a fiddle, and strong as an ox! She can read, write a little, use a computer, run and play, is into music/dancing and her speech is improving all the time. But yes I have to give her 100% attention when we are out, but of course babysitters/friends are a godsend.
Good luck!

I don't have a DC with DS, but I have a cousin with it.

She is now 45. She had a tiny hole in her heart and had an operation to fix it. Times have obviously changed and unfortunately when she was small she was not expected to achieve much. It was discovered when she was 16 that she was deaf and then had a hearing aid. At this time she started to speak, which she had not done before.

She is now a fully independent adult, she has a husband, a job, and her own home.

She is a lovely girl/woman I say girl because she has that slightly naive quality, apart from the fact she is quite easily upset and can become very emotional she has no other obvious problems.

She has been an absolute joy to her family and has always had such a wonderful sense of humour.

Hi. I just wanted to let you know about an interview I am doing tomorrow on our local hospital radio station.

The lady I am interviewing is the mother of a 13 year old little boy with Downs Syndrome. She is going to be chatting to me about your life and family experiences since he was born. She was particularly overwhelmed by the clinical and sometimes negative info she received concerning her son and his special needs, particularly immediately after his birth.

As a result of this, the lady in question has written a book called 'The Gift', to try and give parents an honest and different perspective on life with a child with Down Syndrome.
You can tune in live tomorrow (Fri 7th Jan 2011) at www.radiohorton.co.uk. Radio Horton is also on FaceBook, so you can listen in and ask questions/make comments during the two hour show. Hope we can help.... x

Hi & congratulations on your pregnancy!!

Like a few of the posters on here, I didn't know my gorgeous DD had down's until she was born, she's now 9 months old. It was a huge shock & I also cried a lot for the first few weeks, but like the others have said once you get over the shock it really isn't anywhere near as bad as you think it is going to be.

My dd may be a little behind other nt, but she's currently lying on her stomach waving a plastic bucket around her head whilst her lovely (not to mention patience of a saint) portage lady is trying desperately to try and get her to take a toy out of it rather than use it as a weapon (I'm so proud ), so basically she's just like any other toddler except she needs a little more support.

Feel free to message me if you need any support / have any questions & good luck with the birth!

Sorry.....if you are interested in tuning in we are on air tomorrow (Fri) 10am -12pm!

Firstly: Congratulations!!!

This must be an uncertain and worrying time for you and you must have a million questions, which is completely normal.

My DD has DS, it was diagnosed at birth, and if I'm going to be completely honest with you, I was absolutely devastated. I just instantly started worrying about her, about her future, her health, her happiness. But now, looking back, I'm not quite sure what all the fuss was about :)

Initially there were lots of appointments, and this was a little over-whelming at times (mainly because I'm totally disorganized), but these reduced with time, and I got used to juggling things around.

DD is now 15months old and really is the light of my life. She doesn't have any cardiac issues, thankfully, and her hearing is fine, but she was born with cataracts so needed an operation at 8 weeks old and now wears contact lenses, she will always have quite poor vision.
She can't do a lot of things other NT babies her age can do, but there are some things that she CAN do that other babies her age can't (e.g. she sleeps through the night - sometimes 13hours - and always has done!) Her personality makes up for everything she lacks; she is fiercely determined (i.e. she cannot crawl, let alone walk, but makes her way around the house by rolling everywhere :) ), she's stubborn and bossy, she's cheeky and hilariously funny, and she's sociable and loving, she LOVES being with her family.

I'm not going to lie, I do still have dark moments where I worry about her future, but all it takes is one cheeky smile or wave, a raspberry or a giggle, and I just melt and forget all about it. Everyone who's met her has completely fallen in love with her, and doesn't she just know it! :)

She's doing very well, and I'm so proud of her everyday, and she has taught me that love and happiness really are the most important things in life. She is loved and she is happy. Therefore so am I.

Hope this has helped you a little bit. Any questions, fire away, there are plenty of us around who will be happy to try and answer.

Hi all I am new to momsnet and am so glad I came across this site as I am currently pregnant and in need of some advice.

At my 21week scan my baby was found to have a VSD small fermur small humerus and cerblum
I was very shocked as I have never had any
problems with my other 3 pregnancies.

At 22weeks I was sent to have a detailed scan and it was discovered that my baby had a AVSD and the subject of downs syndrome was mentioned.
I was really worried aboout the AVSD as I hadnt heard of it before and I thought the Dr was telling me my baby was going to die but as soon as they said it was operable I felt a big weight lift off me. When I was told I had gone from having a 1:3000 chance of having a Downs Syndrome baby to a 1:2 chance again I was relieved I know that may sound strange to some people but I have worked with people with Downs Syndrome in the past and know how loving and rewarding they can be.

Over the past couple of weeks I have been going thru a bit of a roller coaster ride as with every appointment something else is being mentioned. As I said at the begining of my post my baby has shorter femurs and humerus at my last detailed scan I was told that my baby has 3 possible birth outcomes now not just 2.
the only constant thing the drs are saying is my baby has a complete AVSD and will need surgery but the possible outcomes are
1: she cud just be born with the AVSD
2: she cud be born with Downs Syndrome and the AVSD
3: she cud be born with a rare form of dwafism and the AVSD
Has anyone out there had been told the same.
I will love my baby no matter what the outcome but wud just love to hear if anyone else out there has had the same experiences.

Its me again guys sorry I forgot to say I am now 29weeks pregnant and in the next 5 weeks I am booked in for 2 growth scans and a detailed cardiac scan as well as normal ante natal appointment.