Advice needed from parents of kids with Down's Syndrome

[KatyH]

I'm due dc2 in Jan 2008. I had a termination at the beginning of the year for anencephaly so was keen this time round to know if there were any neural tube defects. Anyway, had the [stupid feckin] AFP test to check for spina bifida and it came back high risk for down's...! Hadn't paid much attention to the fact it tested for that which was stupid as I didn't really want to know. My risk is 1 in 129 which I know logically is pretty low and we have refused the amnio because we would never terminate a baby with DS (it was bad enough doing it for a condition incompatible with life). However, by nature I am a bit of a control freak and feel that I would like to prepare myself for the possibility that I am the 1 in 129.

Basically, I would like your advice on what to expect if I do have a baby with DS. How is it different from having a baby without DS (if it is at all)? In my head I imagine many of the difficulties probably come later in life with schooling and trying to enable them to live as independent a life as possible...but I'm probably being very ignorant now! I've just been a little worried by people's comments on our 'bravery' and being 'able to cope' and it got me wondering...is it really that difficult? What would be the main thing(s) you would advise another parent to prepare themselves for?

We did have the detailed scan which showed no other markers of DS, so at least I could be fairly confident that if the baby does have DS it should be generally physically healthy (assuming all else goes well).

Sorry, this is rather long-winded All words of wisdom gratefully received

P.S. Sorry, I'm posting this as I'm about to go to bed (very rude of me - but I rarely get a chance to go on MN before 11pm!) so will most likely check in again tomorrow.

Congratulations Mr Graciefer! He is so so beautiful. What a turbulent couple of days you must have had but it looks like it was more than worth it. I hope you will stay with us on MN for a while. Like others have said I can testify that this site is a godsend and I'm sure you will receive all the support you need. There are some truly inspirational people on here and I for one feel privileged that they have taken the time to share their experiences with me. I can't pretend that I'm not still a little bit scared but hearing others' stories and seeing pictures of their little ones gives me a great deal of reassurance, so thank you! Good luck with the scan for tomorrow, I hope all goes well. I'll be thinking of you.

Also hello to Buzzybee. It's so nice to hear from you. I felt the same at the scan, I went in thinking 'please give me the all clear' (i.e. so that I could have some hope that the baby didn't have DS) but after watching the baby for so long found myself thinking 'that's my baby and I would just be really happy if they could rule out cardiac defects'. It's weird how your perspective can change so quickly! You are about 5 weeks ahead of me so it would be great if you could keep in touch and let me know how things go

Hi to Hungrymama too, how are you doing now? Sorry I haven't responded, been out and about over the weekend. Do I take it from your post that you are not going to have the amnio regardless of the scan results? Whatever you've decided I hope you're more at ease with things. When I said in my last post that I didn't care if the baby has DS, I'm not sure if I'm entirely there yet. It is still largely the great unknown and I do worry about what adversities may face us (but then I keep telling myself that it's the same with any child!). However, seeing the baby on the scan took away so much of the fear and I really hope the same happens for you.

Take care

xxx

Your baby is so scrummy I could eat him! Has he got a name yet?

CONGRATULATIONS!!!!

Congratulations Mr Graciefer, your ds is positively gorgeous

TC - the pics of your dd's are stunning, I especially like the second one down (cheeky face).

Congratulations to Mr and Mrs Graciefer

Your new son is just scrumptious - those cheeks!! That hair!! He's beautiful!

Hi KatyH, I'd love to stay in touch - will bookmark this thread and check back in from time to time. My 5yo DD and I are off on holiday this Saturday for 10 days (I live in New Zealand so school holidays coming up here) and am scheduled to see my MW on Sept 27. When is your next MW appointment? One of the "soft markers" they found was slightly dilated kidneys so I will be having 1 more scan before birth to check what's happening with that (hopefully won't be any worse). I really don't like having the scans now but realise its best to be prepared for any complications that need treatment at birth (completely independent of DS). I'm still hoping to have a homebirth too - keen to stay away from the hospital if I can!

I have found this site incredibly helpful and it has really opened my eyes in many respects. I would never have questioned the value of all those ante-natal screening tests before this PG whereas I now feel that the way they are just "doled out" in a very haphazard and unco-ordinated fashion is quite appalling. I don't have the strength now to challenge the current system but it is something I'm thinking about and may end up at least writing a letter to our Minister of Health about.

Hope you're well - when exactly are you due (I'm Dec 22 give or take)?

Buzzy xx

Hi to Housemum too!! Also if either of you want to email me its

lmeade AT orcon DOT net DOT nz

Sorry that should have been hi to Hungrymama - blame PG brain

Quick update, Grace is feeling much better today - the blood transfusion seems to have done its job and she has had all the various needles and tubes removed, so is much more comfortable.

DS2 the heart scan this afternoon, the consultant said he had been very thorough and 'nit picky' and was pleased with what he saw. He did see blood leaking from one side to the other in one particular place, but said this is normally in the first few days of life.

He wants to do one more scan before they leave hospital, just to be absolutely certain everything is fine, but we are feeling very confident.

Various amount of blood taken today, for genetics testing, blood thickness etc, will have to wait on those results.

Saw a psyhio for the first time today, she said his feet problems are structual rather than postional after all and that they would be using the ponseti method on him.

He has his first appointment on Monday where they will put on his first cast, she is confident that things should be corrected in around 6 casts and maybe 1 operation on his tendon at the back of each of his feet.

So overall we are both feeling a lot more positive after today, unfortunately no more pics today as I have left the camera with Grace to take a few more pics, as he is playing the 'I won't open my eyes while you take a picture' game with me.

Thanks for all the congrats.

Mr Graciefer

Pleased that Grace is feeling much better and fabbo news about the scan.

Glad the scan went well, and that the transfusion has helped

Really good news Mr G about the scan and the transfusion (congrats to Mrs G too, sorry, forgot to say in previous post ). Looking forward to seeing more pics.

Hi all, just been catching up on all the news. Wow, this thread has turned out to be a very special thread indeed.

Gracifier and Mr Gracifier, massive congratulations on the birth of your son
So pleased that Grace is ok. Blimey, the poor woman, she's really been through it aye.

With regard to your son having Down's syndrome, you may know from past posts that my eldest DD, Lottie, has Down's and I'm happy to chat to you, either on here, by email, by phone, or if you live locally - in person. I'm more than happy to answer any questions and would be happy to support you in any way that I can. However, I feel sure that you'll need little help other than just the usual love and support you'll get from friends and family. I think you'll find the world to be a much nicer place than you thought it was as you watch people unite and come together and be touched by the presence of your son in their lives

KatyH my dd1 attended a fabulous nursery for a year prior to our returning to Australia. At present here in Australia she attends a mainstream kindergarten.

I am sure legally they can not refuse to enrol a child on the basis of their special needs.

Graciefer and family - congratulations on the birth of your wee boy. I am a mum to three girls and the younger one adores her older sister who happens to have down syndrome.

I well remember tube feeds - My dd1 had them four hourly for the first eight weeks of her life.

Dd1 was also born with a heart defect that was repaired at 8 weeks of age. ( very scary time) she had abit of a rocky road to recovery but now at 5 unless you see the zipper you would not know.

I have just left her at kindergarten ( I was down doing parent committee jobs) she loves it there and they love having her - the kids cope really well with having her in their class and whilst they notice differences - they are not hung up on it like we adults are.

Your son will have the best life you can give him - down syndrome or not.

Glad to read all is improving with graciefer.

Have been away so just managed to catch up with this.

If you click on the clipboard - think there are still some pics of dd1 there.

graciefer's dh - your babe is gorgeous. Love the pic.

Have put in a couple of dd1 ng tube and all.

Re the nursery thing.
My DD went to a basic nursery that she loved who were happy to have her before going to a Montessori where she was without doubt the most loved child there! I actually got her statemented earlyish and she had a 1-2-1 teacher for 10 hours of the week while there.
She now attends a mainstream school where she is doing well. Yes it has it's difficulties, mixing a child with SN's who developmentally isn't at 5 yrs old yet with NT 5 yr olds, but she has a great 1-2-1 teacher for 25 hours a week, plus it's a great school with lovley children and wonderful parents and very good teachers. It's never going to be a total ride in the park but that's ok, as long as overall it works, which it does.

I only had a couple of bad experiences when I went round looking at nurseries for Lottie, one said 'ohh a Down's we've not had on of those before, we've had a deaf but not a down's' and I thought, oh right, and nor will you ever have with comments like that and crossed them off my list and another nursery that seemed intent on telling me all about a nursery where they had lots of children with SN's rather than about theirs so they got crossed off too. Other than that people were totally unphased by her having DS and welcomed her with open arms, same with applying for schools.

Thanks again for all the congrats and the sharing of the pictures, you all have such beautiful children.

It is so comforting to know that there are people out there who will have gone through similar things that we have/will be going through, that are kind enough to other advice and support.

Any positive day, now they have confirmed he has fixed bilateral talipes they also want to scan his hips, even though the hip score seemed fine.

Apart from that, they said he can come home as soon as they are happy with his feeding, so hopefully that will be sooner rather than later. Then we just have to go back for the hip scan and the Ponseti treatment.

Grace can't wait to be home, especially as she hasn't seen DS1 since Friday. She is 100% better and raring to go.

Talking of the Ponseti treatment, I am about to sit down and watch a DVD they gave us about it today, so no doubt myself or hopefully Grace will be back here soon starting a thread asking 101 questions about it.

Thanks again.

Mr Graciefer

Any = Another

*Note to self, must preview messages before hitting post

awww hope Grace and ds2 get home soon. I think dino's ds1 may have had ponseti treatment, so you should get some answers on here.

Gracifer - the STEPS website has info about Ponseti.

STEPs website should be useful for info about talipes/ponsetti method. (no personal experience but good friend of mine has a DD who has bilateral talipes). Her DD has been treated very successfully with a combination of a few operations, ponsetti method, and now she is 3 she wears splints at night.

congratulations again, and hope that graciefer and DS are discharged soon.

KatyH - well done you for starting this thread - it's ended up being a complete lifeline for more than one of us!!!! How are things with you? Any decisions on the scan thing? We have our 'anomaly' one this coming Thurs. I have swung from extreme emotion to complete calm and am embracing this new stage with a very glad heart !
I think I'll be a bit thrown if they find any possible problems, but only in a 'my poor baby' way.
I think I felt my first kick a day or so ago (which was week 18) nothing since. All this 'you'll feel the second one SO much sooner' nonsense hasn't really happened for me! But it was great to feel and I'm SO looking forward to seeing 'Tiddler Frog' in more detail .
When are you due by the way - never got round to asking! I'm Feb 14th .
Lots of love
xx

Congratulations to the Graciefers. He's a beautiful little boy.

Hi Hungrymama, I was just thinking about you today and wondering when your scan is. I'll have everything crossed for you on Thursday. I remember just how terrifying it can be but I really hope it all goes okay.

I'm doing fine thank you. I seem to have really positive days when I have a que sera attitude, then really negative days when I just worry and feel scared. On the whole though there are more positive than negative days which I guess is progress. Still haven't decided about the 4D scan though. Part of me thinks it would be a great idea just to be able to bond with the baby and get a bit more excited, then the other part of me thinks they'll just find something wrong! Honestly, I was never so negative before this year. I now feel that every time I go within a few metres of a health professional they consider it an invitation to give me bad news!

Also, what a great day to be due a baby. My mum was due to have me on the 14th Feb but I arrived the day before (I always felt a bit cheated). Still it was great getting lots of cards in the post so close to Valentine's day. I'm sure our postie thought I was some sort of Lolita I am due the 26th Jan btw, which feels such a long way away!

The kicks are great aren't they? I think I'm a bit odd in that I've always felt them really early on. I'm sure with my dd I felt her kick at 13 weeks, although my GP quickly told me I was an idiot for thinking this Still, it's great to get that reminder that it's just a baby in there instead of thinking of it in terms of HCG, AFP, nuchal folds, nasal bones etc etc...!

Please let us know how it all goes on Thursday and give my love to tiddler frog

xxx

Hi KatyH
Tiddler frog looked just fine to me!!! . The scan was on Thurs and everything seemed fine - a really wriggly baby with everything in the right place. Having been ultra calm and chilled up to the day I suddenly felt very emotional when it came to the scan and couldn't look for most of the 'diagnostic' bit. I just lay there with tears seaping out praying that this tiny little baby of mine would be okay. Then, once they said everything looked fine I was able to enjoy looking at the screen. What a wonder it is to see in such detail - hands, feet, arms, legs - albeit a bit reminiscent of Gollum in Lord of the Rings but there you go!
Today I saw my midwife and a consultant. I confirmed that I don't want an amnio and will be hanging onto our critter no matter what, so I'm scheduled to have scans at 28 and 34 (I think) weeks to check on growth. Apparently if it suddenly slows down its growth it can be a sign of DS. I'm happy with this. I don't think I can spend the next 4 1/2 months worrying endlessly about something that might not happen so instead I'm going to try and just enjoy those kicks and nudges and work on loving my little tiddler as best I can. I sort of think that if there is a potential for my dreams to be rocked after the birth then I may as well enjoy the bit before to the max - this is the theory anyway! I'll let you know how I get on.

You've had such a rough ride over the past year, you're bound to feel anxious about medical things. I'm sorry that things are so tough for you . Here's hoping that the safe arrival of this baby, healthy, whole and perfect, will start your new year off with a real high! I can't help noticing that Christmas things are in the shops already (makes me feel quite ill!) so January can't be too far away ! I'm sure you'll have nativity costumes to whip up and lines or dance moves to learn with your DD - that'll keep you occupied. My DD is busy learning songs for Harvest. I'm just dreading the letter the night before asking for a scarecrow costume or a turnip. Last year I had to whip up a carrot suit over a weekend, complete with green feather 'sprouting' on her head - a classic, but only really worn the once!!!!
Okay, that's me done for now. I hope that you have a good weekend. Thanks so much for thinking of me on Thurs.
Lots of love HM
xx