Babies born with a little extra - Downs Syndrome & other conditions

[Snoopylove]

Hello everyone, my baby son is 5 months old and is currently learning how to roll from his front to his back, which is amazing considering he was 5 weeks premature and has Downs Syndrome. I've decided to start a positive thread for new mums like me whose babies may have been born with a little extra something; a condition like Downs Syndrome that may have been unexpected and initially come as a surprise/ shock. Hopefully like me, once you've got your head around it (not always easy) you're revelling in your little one and looking to share tips, ideas, frustrations and mum stuff.

My son has Trisomy 21, Downs Syndrome (T21) our chance of him having the condition when I was pregnant was really low (1:5000). In fact, we didn't find out the news till a few weeks after he was born.

Candidly our first reaction was shock and disbelief, we did all the tests and assumed our son was 'perfect' only to find out that that reality was somewhat different. What made things sting a little more is that we'd gone through 7 rounds of IVF and used a donor egg after 3 early miscarriages with my own eggs to arrive at this situation.

But I can honestly say, apart from the shock of the initial diagnosis and the rush of tests to check for any underlying health conditions, our baby is our perfect son.

That's not to say T21 doesn't come with its challenges, but so does bringing up children with other conditions. Even relatively benign conditions like Asthma, comes with added stress and fear.

There's so much more support for babies & children who are born with a little extra something. But if you're like me, you probably spend half your time on the web to see what could help your child and the other half scared of the unknown and how much he might be affected by the condition.

My first tip for parents who have a baby with low muscle tone is oodles of tummy time, gradual at first 5-10 mins before each feed, then tummy first when they're awake until they get bored/ want a change.

What's your situation and what advice do you want to share?

[quirkychick]

Not a baby, but my dd is now nearly 8. I thought I would post some things that were helpful when we were at that stage.

1. we were referred to Portage, and had monthly sessions from about 4 months and later weekly sessions. We had one of those thermal, silver blankets from Poundland, I think, which she loved as it was shiny and crackly. Portage had loads of suggestions for making the baby gym really exciting to encourage movement.
   
2. we did baby signing from a few months too, mostly to teach me so I could teach her. Even if you don't keep signing, it can help support speech in the early stages and help stop a lot of frustration.
   
3. baby massage and baby yoga through the Sure Start, I think, it helped with sensory issues, awareness of body parts and general physical development.
   Hth

[Snoopylove]

Thanks Quirkychick, great suggestions, I've not heard of Portage but will look them up! :-)

[Threenme]

I've just found out my ds has Congenital hypothyroidism and though I know it could be so much worse it's really upset me as he'll be on drugs for life. I think we're really lucky to live where we do to have access to screening and readily available drugs.

[Rarotonga]

Lovely idea for a thread OP :)

Threenme- I was diagnosed with congenital hypothyroidism at a couple of weeks old. I know my parents were terrified at the time. My mum subscribes to the British Thyroid Foundation newsletter and I think there are local groups and events. Just wanted to reassure you that I have no related health issues and am fine, no one would ever know. I didn't used to mind the blood tests as I always got a little treat afterwards and used to find any hospital appointments (to be weighed and measured) exciting more than anything. I've never known any different in terms of taking the thyroxine, it's just been part of my life for as long as I can remember. Hope this helps, feel free to PM me if you want to x

[Snoopylove]

Thanks Rarotonga, hope you feel more reassured Threenme.

Quirky chick, I've been looking into sign language too, it's a great skill to help children with communication even if they don't have speech challenges. Matakon seems to be the most popular one. Id be grateful if you could know if there's another one you found helpful

[Threenme]

Rarotonga thank you so much, that's so lovely to read. We will try and make the experience just as positive. I think I'm terrified his drugs won't work properly or something. Even if he has a sickly burp after his tablet im worrying. Your words really have been a comfort.
Snoopy I'm so glad I've stubbled across this thread. Thanks for starting it. I have a feeling it's going to be a lovely read when it really gets going x x x

[Rarotonga]

That's ok, Threenme :) Glad to have been able to give you that reassurance x

[quirkychick]

Snoopylove we did Tiny talk babysigning which is based on British Sign Language (BSL). Basically signing is quite regional , so there can be several similar variants of each sign and we often learnt a few versions. Makaton is based on BSL, too. It's what Mr Tumble does on Cbeebies. I'm in Norfolk, and they mostly use Signalong which is very similar. I wouldn't get hung up on particular signs, it's more important that you use a sign consistently to support a word iyswim. We use a mixture tbh, as dd loves Mr Tumble and Singing Hands (check out their dvds,lots of signing with nursery rhymes and songs), so uses some Makaton, some BSL as she was at an infant school with a Deaf Unit and some Signalong, as that's what the Speech Therapists etc. use here and they use it in her present school. Sorry if that's a little confusing! But they are all based on BSL and have very similar, if not the same signs.

[reallyanotherone]

Lovely post.

One word though, asthma is not benign. It kills. And it often kills because people think it’s “only asthma” and don’t seek help for a child until it’s too late.

[WipsGlitter]

Hello! My DS is now seven. We also double Mc out when he was born. He’s truly the light of my life. Yes there’s challenges but they’re outweighed by the love 💕

[WipsGlitter]

Double Mc???

Found out...

[Snoopylove]

Hi Wipsglitter, that's lovely to hear thanks for sharing. Was there anything in particular that helped / supported his progress when he was little?

[Snoopylove]

My baby can't yet hold his head and I'm getting different advice on weaning. Some say start now because of him suffering with Reflux (his corrected age is 4.5 mths as he was premature) others say wait till nearer 7. What did you guys do? :-)

[WipsGlitter]

I talked to him lots! His speech is fantastic now. He went to a mencap nursery when he was about three which was great.

[Snoopylove]

Reallyanotherone thanks for your kind words :-) I absolutely agree with you re Asthma. I am Asthmatic and my uncle died from it, so it’s definitely not to be taken lightly. I meant ‘relatively benign’ as people tend to assume it’s not dangerous or life changing, but it can be as you rightly pointed out.