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Here are some suggested organisations that offer expert advice on special needs.

Original poster

New born just diagnosed with down syndrome

35 replies

rougedad · 22/07/2012 13:42

Hi there,

Despite being a lurker on the boards for some time (since my girlfriend fell pregnant)!This is my first post on here.

Due to complications, our son was born 7 weeks premature last Tuesday. The doctors suspected downs syndrome due to the way some of his features looked, preliminary blood results confirmed the diagnosis a couple of days ago. Luckily all other scans/tests are ok, and we believe he has a healthy heart and bowels.

After the prenatal screening for DS we were deemed low risk and were in no way expecting this. To say we are devastated is an understatement. We've been through every emotion in the book in the last week.

Things seem even worse as we are currently stuck in hospital until our boy can establish feeding. I'm sure others on the boards will have been in the same situation, so any advice for getting through these tough early stages would be greatly appreciated.

Thanks for reading

RD

OP posts:
TheMonster · 22/07/2012 14:30

I've no experience so I can't offer advice, I think you deserve a bump so someone can respond.

DukeHumfrey · 22/07/2012 15:06

No practical advice but "Welcome to Holland" is about coping with the new reality - not the one you had expected.

Hope all goes well for you.

Badvoc · 22/07/2012 15:49

Didn't want to read and run....you may get more answers if you post this in health too?
Congratulations on the birth of your son by the way!

sonora · 22/07/2012 15:50

Congratulations on the birth of your son. My ds was born with Down's Sydrome and we also had a diagnosis shortly after he was born. My son is four now but I can still remember how emotionally overwhelmed I felt in the early days. Just take one day at a time, remember it's ok to feel sad or angry, to have a good cry.

I didn't have any problems with ds breastfeeding but the DSA have some really good advice in their new parents booklet

Booklet for new parents

It may be worth getting in touch with your local DS support group as they often have a new parent contact and are a great source of advice and support from other parents who have probably had similar experiences.

Enjoy your little boy, I really miss those baby days!

slacklucy · 22/07/2012 16:20

Congratulations!
I don't ahve experience of DS diagnosis. But I do know what its like spending a long time in SCBU with a newborn when things are just not as you expected them to be.
Take each day as it comes (cliche I know) but try to cherish your sons first few days, take lots of photos, videos etc just like you would if he was at home.
Its something we never did & now we have only one or two photos of his first few months.
Feeding can take a while ds2 was so slow to develop the suck reflex & then it seemed like forever before he was able to take a full feed by bottle without becoming exhausted & ahving the rest down his tube. We never did master breast feeding but if its what your girlfriend wants stick with it & make sure she gets support from a bearst feeding specialist.
He'll get there.
Dont be afraid to ask questions, even if you ask the same question again & again until you understand it.
Don't be afraid to get stuck in with his care, its difficult when so much is being doen by nurses to know what you can & cant do & when.
Get as many cuddles as you can... no such thing as too many cuddles :)

5madthings · 22/07/2012 16:31

i dont have any advice, but wanted to bump this, it may bequiet today as its the first weekend of the school holidays.

firstly congratulations on the birth of you son, does he have a name? :)

and secondly my tip would be to hold your girlfriend close, you are both going through an emotional rollercoaster at the moment and you need each other.

there are other parents on mnet who have had the same/similar experiences and i am sure they will be along to support you soon, you could also try doing a thread search in teh advanced search bit.

congratulations again and yes do make sure you get lots of snuggles, the newborn time is very precious xxx

eatyourveg · 22/07/2012 16:42

Second the welcome to Holland poem. I re-read it from time to time and by the time I get to the end of it I always feel privileged to have been given the chance to be a parent of a very unique child.

Congratulations on becoming parents

Galena · 22/07/2012 17:39

Congratulations.

Again, I don't have experience with DS - except 3 of DD's friends with DS - but DD was in SCBU for 9 weeks when born due to extreme prematurity. Definitely check your local area for DS groups - they are fantastic support and someone there will have been through whatever you are going through.

I agree though - lots of pictures, write a diary while in SCBU and enjoy him - I bet he's gorgeous!

cocolepew · 22/07/2012 17:44

Congratulations on your new son. I work in a special school and there is a coffee morning every week for parents to go to, whether or not your child goes to the school. We also run a baby one every two weeks. It might be a good idea to ask at any schools nearby you? Apart from the support of the other parents there are a lot of resources in school that can be borrowed and the physio/speech therapists are there for a chat.

Original poster
rougedad · 22/07/2012 19:53

Thank you all for your posts, much appreciated. Some very useful info above.

It's a very hard time for us at the moment, but already speaking to a few people who have had experiences with down syndrome children has definitely helped us.

We've named our son Oscar, he's a cracking little boy and we are so proud of him.

Thanks again
RD

OP posts:
cocolepew · 22/07/2012 20:26

Oscar's a lovely name Smile

5madthings · 22/07/2012 20:32

Oscar is a fab name (i am biased as my 10 yr old ds2 is an Oscar!)

welcome to the world little Oscar, you will do well with such a great name and with parents who obviously have fabulous taste in names! Grin

eatyourveg · 22/07/2012 20:40

I have had a student in my class this year who has DS. He's one of the most popular guys in the whole college. DS kids are such experts at bringing out the happy vibe in people.

Oscar is a great name

WipsGlitter · 22/07/2012 20:42

Welcome Oscar!! I also had a diagnosis of downs just after my son was born. Huge shock. Cried a river. Like you he has no additional health problems. The first few weeks and months are hard but you get into the swing of things, all a new baby needs is love. Now, I love very bit of him and my heart sings when I watch his little face.

Agree with poster who says take it a day at a time. Don't overwhelm yourself with info. I'm on a Facebook group future of downs and there's lots of advice and support on it. Please pm me if you have any specific questions.

devientenigma · 22/07/2012 20:53

Hi RD and congrats to you both.

Another one here, low risk, DS diagnosed after they found his heart condition after birth.

All I can say is take each day at a time, remember just to treat him like any other child, no different, don't get hung up on peoples personal experiences and seek advice if you need it.

There will be a DS protocol to follow and you may get support from hospitals, portage, physio, OT and SALT.

Another little tip that sounds really stupid, however it's the only thing I have ever read or been told that helped is when the tongue protrudes, tap it and it goes back in. I also used to say tongue away at the same time. He only ever sticks his tongue out when he is ill or having a siezure.

Any questions feel free to ask x

saintlyjimjams · 22/07/2012 21:48

Hello :) I don't have a child with DS but do have a son with severe autism so was thrust unexpectedly into the world of learning disabilities. It's a world i'm happy to know now, although it took a while to come to terms with.

This blog, about the unexpected birth of a child with DS is beautiful. I hope it helps you :) I can promise that after the initial shock you won't mind about the DS in the way you may do now.

www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

2old2beamum · 22/07/2012 21:51

Congratulations, can't put myself in your shoes, but have adopted 4 with DS. Sadly one died due to severe heart defect. The other 3 are now adults but bring their Dad me and siblings such joy, please look at the "can do" rather than "can'ts"
enjoy your son

Original poster
rougedad · 23/07/2012 09:02

Thanks again for your kind messages. It's great to hear that there are people with the same experiences, and is definitely a source of strength! I may well message some of you with questions when things settle down a bit.

We're hoping to take Oscar home today, fingers crossed :-)

OP posts:
5madthings · 23/07/2012 09:36

oh wow thats lovely, fingers crossed you get to go home and can then enjoy all those cuddles with your home comforts :)

mygladhart · 23/07/2012 10:18

This reply has been deleted

Message withdrawn at poster's request.

cocolepew · 23/07/2012 11:39

I hope Oscar does come home today, how exciting !

pinkorkid · 23/07/2012 11:50

Congratulations and welcome to Oscar.

quirkychick · 23/07/2012 12:09

Hello rougedad and Oscar.

My dd2 was diagnosed with ds at birth. She is now 2.5yrs. I can honestly say that the diagnosis was the worst bit. Cry if you need to. You need to grieve for the child you thought you were having. Then you can accept and love the child you have. My dd is an absolute poppet by the way. Very charming and popular. But also monkey- currently climbing the sofa!

We had problems with breastfeeding as she could latch on but wasn't strong enough to get a proper let down. I had lots of help from the Breastfeeding Network and by 6wks we'd cracked it and were reducing top ups. By 11wks we had reduced top ups and she fed until she self-weaned at 2yrs. NCT or BfN have helplines with breastfeeding for you.

glimmer · 23/07/2012 16:04

Welcome earthside Oscar and Oscar-dad. I have been where you are rougedad
and know how devastated you are. It's a grieving process for the life you imagined. Although it's hard to believe at this stage, it does get better. I would say in a year you are back to yourself again. Enjoy the precious first time with your son!

mariammariam · 23/07/2012 22:36

Congratulations on your lovely Oscar. Welcome to the board. And be aware you probably know some dc with special needs already, though most are diagnosed later than down syndrome so their families may still be in blissful ignorance.

Like my dc who started with the paediatrician age 5y and seems to add an additional diagnosis every year...