New born just diagnosed with down syndrome

[rougedad]

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

Congratulations RD, oscar is a lovely name!
Hopefully you are now settling in at home
We have a pre natal diagnosis of DS, due October, baby needs an op within a few days of birth due to a blocked bowel, so we are trying to get ready for the challenge ahead
It's really good there are no health complications, probably why it wasn't picked up pre natally; they keep finding things in our scans! Hating scans now!
Is Oscar your first?

Hi RD - congratulations of your beautiful baby son!

2 years ago we were in exactly the same situation, so I can understand how overwhelmed you must be feeling right now.

If it helps, today my beautiful DD is the love of my life and brings an unbelievable amount of happiness into the lives of everyone she meets.

For example, today we went to the zoo and she spent the entire time smiling, waving & shouting "hello" at everyone she saw & telling them her name. More impressively, everyone (even the grumpy looking ones) smiled and waved back, whilst she blew kisses back at them.

The only advice I'd give you right now is to be kind to yourself & each other, it will get easier once you get through the rough initial few months, and in the meantime this board is a fantastic support for the days when it all seems a bit too much.

Take care

Thanks again for the messages. It's been a couple of weeks since the diagnosis and already things seem better. Busy doing lots of research on how we can help him develop and grow!

Love reading stories like proudmum's, really gives me a lift!

Yes Oscar is our first. He's proving to be quite an easy baby to look after so far as he loves his sleep. I'm sure things will change in no time :-)

Congrats on the birth of your son x

Dd2 was a normal pg/ term labour baby but has cp due to birth hypoxia, so I can empathize with the suddenness that your expectations are changed.

She is 8 now, and we have had the privilege of meeting children with many different dx inc ds, as we wend our way through life.

It took me about two years to lose the shock and grief, and get my head around the system, but these days it's just a part of our lives.

Congratulations again - I love 'Oscar', so cool. X

Congratulations! Our son is 2 now and his diagnosis was completely unexpected to us too, it took a while to get over the shock. Like Oscar, we are fortunate that he does not seem to have any of the other problems often associated with Downs syndrome.

The Down's Syndrome Association are very supportive. We obtained a new parents guide from them for free after our son was born which was very informative.

We found our local support group very useful. Other parents of children with Downs are the best source of reassurance and information in our experience.

Congrats on the birth of your son! I don't have kids with DS but I have had two premature babies and understand the wait and stress in hospital whilst establishing feeding. One of my daughters refused to breastfeed at all so I had to formula feed her. The other one fed fine. They were born at 32 and 33 weeks. It can be very hard for prem babies to learwith no other complications to feed so make sure your wife doesn't feel too dissapointed if it doesn't work out. I hope you get him home soon to enjoy him x

Congratulations on the birth of baby Oscar, beautiful name. I worked for many years as a 1 to 1 with a little girl with DS and she was a joy to work with and is now nearly 10 and doing well in school and adores sport. My daughter has autism and Crohns Disease although not diagnosed until 3 years we knew at 4 days old she was a gift and wouldn't change her one bit!

Congratulations ! No direct experience but know the parents of a child with DS who found the Portage Service invaluable. It is worth seeing if they have one in your area.

Congratulations on the birth of your son. Love the name!
The town I live in has a special needs centre, there are toys, soft play, safe gardens etc... I know i's early days but it may be worth finding out if heres similar in your town as it's a great way to meet other parents in similar situations. Our centre is fab.

Congratulations on the birth of Oscar, I have a little boy with DS, aged 22 months now, we didnt know before he was born, but were classed as high risk. There is a lot of support out there, and you will probably find a lot from other parents with children with downs. There is a brilliant website called Future of Downs, and if your on facebook, it also has a good page on there. Another good blog worth taking a look at is Noah's dad, he has a son with downs as well and he is so upbeat and positive and really has some good info on there. If theres anything else i might be able to help you with just ask.