Disabilities In Children – Spina Bifida | Parents

Disabilities In Children – Spina Bifida | Parents


Hi. My name is Elizabeth and a mom to Emily
who’s 3 and has Spina Bifida. For parents who have just received the diagnosis that
your child has Spina Bifida, I tell them that it really is going to be okay. There’s probably
around very scary medical information that you’re receiving from the doctors but at the
end of the day, you’re going to give birth to a beautiful baby. You’re gonna love that
baby unconditionally and everything that you’ll be facing in terms of medical needs or therapeutic
your child needs will become your new normal. I know you just got to figure out like you
always do with the first time here. Something’s have to become a new normal in our lives since
Emily has been born with Spina Bifida. Have been arranging our schedules for an increase
amount of therapies. There are few medical responsibilities that you have to do in terms
of surgeries which can be frightening but are also necessary for your child. There are
some additional medical things we’re taking care during the day. The things that I think
are most important for families for not raising child with disability to know about — these
kids which is like everyone’s kid. They may have some things individual but the beauty
of it is that’s what we all have. I might wear glasses and she might use a walker. But
everybody has their own individuality. The biggest piece of advice I’d say not to do
is not stare without asking question. There’s absolutely nothing wrong of coming up and
say, what’s your diagnosis or why she used it to help? I find that the best thing that
to happen is when kids come up and ask her and always have a great personality because
I tell them what she uses before she needs a little bit of help walking. And they say,
okay and they move on and their done with it. So it’s great for them to come up and
ask. I say don’t be afraid to come and ask, just make sure you’re asking the right way.
I’m extremely happy that she’s growing up in a day in age where there’s such an advancement
in the technology and such a big movement to be more and convincing on people with disabilities
and with differences. My biggest hope for her individually is that she’s independent,
she’s confident and that she just enjoy her life and has a great future.

9 comments

  1. I was 17 I got pregnant and I had a beautiful little girl my name is Anjali and she was born with Spina bifida

  2. They told me I'm at risk for it. I'm freaking out. My aunt has hydrocephaly which can come with spina bifida. And she's a vegetable. Her life is sitting in front of the tv all day till her bed time where they move to the bed. And they had to remodel the house to keep her on same level. Set up ramps. Hoists to kid her in and out of bath tub. Special toilets and chairs to help her up. She urinates in catheters. I'm thinking…. if this is what e have to look forward to…. I'm not going through with it. It would end up in an institution because I wouldn't be able to care for it. This is freaking me out.

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