Spina Bifida, any support from other mums and dads?

[Ottybotty1]

Hello everyone, I have a 6 month old baby daughter with spina bifida. We didn't find out until she was born that she had the condition. It was a lot to take in and I'm looking for some support or people with children who have spina bifida. Sorry if this is in the wrong thread, sorta new to all this! I have many questions and yes we can ask specialists etc it would be great to talk to parents etc too. Many thanks!

Hello otty

My dd has Sb too.

I know what you mean about lots of questions, she was diagnosed in pregnancy and when I went for the next appt I had a list of 47 questions to ask!

I am based in Scotland and have received excellent support from the spina bifida and hydrocephalus charity.
There is an equivalent in England although I don't know anything about them.

Through the parents support group run by sbh, I have met lots of families affected by spina bifida.

Their kids are happy, they are loving and loved. Some are faced with huge challenges but they learn coping strategies and just get on with it.

This is what I most wanted to hear when my dd was diagnosed so I hope it's helpful to you.

Please don't be too frightened by some of the things you read on the Internet.
The adults who are able to write about their situation received the medical care from 15+ years ago, things have moved on significantly.

Im not going to say it's not hard sometimes because it is and I do worry about what the future holds for her sometimes.
However she continues to surpass all expectations, although she can walk distance is an issue so some times I can be seen pushing her wheelchair to the park only for her to jump out and climb to the top of the spiders web. You can imagine the looks I get!

But as my tiny brave girl climbs up to the top, half the size of the next smallest kid on there I remember I was told she would never walk and force myself not to tell her to come down

Congratulations on the birth of your daughter, you're very welcome to ask me anything you would like either on the thread or in a private message

Hi Herrena thank you for the reply! We too are based in Scotland. I have had great advice and help from the charity also!

I find it difficult to wonder what my dd will be like when she's older as she can move her legs, has sensation and moves her toes. Your dd sounds great, that's wonderful that she surprises everyone by getting out of her chair and onto the play park things!

Do you have many people around you with the condition in your area?

Hmm yes and no, I haven't become particularly close with any of the families yet but we have met and chatted with plenty throughthe sbh events.
There's a Facebook page for sbh

m.facebook.com/profile.php?id=303783550141

And for a group of mums who fundraise

m.facebook.com/SBMummies/

And this beautiful page

m.facebook.com/redefiningspinabifida/

The future contains what you make of it, everyone has limitations imposed on them, even super man!
Your job is to raise a child who is not ashamed or embarrassed and who is determined enough to find ways that work for her. Whatever problems you face you will find the most suitable solutions and make it work.

I'm just outside of edinburgh, if you come to the Edinburgh sick kids for clinics we should meet up for coffee :)

Also for your comparison my dd moves her legs independently, she has some sensation loss more so in her feet and one more than the other.
She can't independently move the toes on one of her feet.

At 6 months old she had 0 interest in her feet.

I would recommend that you draw her attention to them (ie play this little piggie) as much as possible to reinforce the neural pathways that do work, particularly stretching them out to keep them flexible.
:)

We were just at Edinburgh sick kids yesterday for a follow up, probably won't be back until next June. We will be getting most of our care from Dundee area.

The physio has encouraged us to help her find her toes too, she is almost rolling over and determined to sit up too.

You sound very positive about your daughters condition and I hope I'm the same as my dd gets older :) I'm friends with the spina Bifida hydrocephalus page on Facebook too, your welcome to add me if you like also 😊

I'm doing a fundraising dip in the sea on Sunday for the charity so hopefully I survive the icy North Sea x

Have you contacted shine as when my DN was born with spina biffida some years ago now they found a local family to help support them and talk to them. It was very useful at the time.

Also not that I would be any help but my DN is a ⭐️. Yes he is in a wheelchair but he is becoming a very sensible and lovely young man.

I am she's a wee love, confident, strong willed, determined, kind.

She's nearly 5, over the last few years it has become clear that whatever challenges she may face due to spina bifida she is going to be happy and that's all that matters.

I was worried too when she was smaller, everything is so uncertain, will she walk (in our case yes) , be continent (with the aid of catheters) , be able to intergrate with other kids (very much so) , will she have to have endless rounds of surgery (2 trips to theatre so far), when will the slew of hospital appts slow down (about 3 when their growth slows down)

How do I add you on FB, I assume you're not otty botty on there?
How about I pm you my FB name and you can add me?

Next time you're coming to Edinburgh for an appt let me know and I'll come and meet you after.

Posted too soon

Are you doing a loony dook?
You're braver than me!

No I haven't contacted shine but I might look into that thank you :) and yes I'm doing a loony dip in Peterhead!!! Mad I know!

Is there anyone else out there?

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