SPINA BIFIDA

What Is Spina Bifida?

What can I say that the experts can't say better.  I hope you will check out these links to read more about Spina Bifida and Hydrocephalus!

Spina Bifida Association of Ontario

I like this link because it explains it for kid's to understand.
Kid's Health

My daughter Rylie was born with Myelomeningocele (my'-low-meh-nin'-go-seal)
Myelomeningocele is the most severe form in which the spinal cord and its protective covering, the meninges, protrude from the opening in the spine.

We didn't know she had Spina Bifida until she was born.   I had a difficult pregnancy with my first daughter and my pregnancy with Rylie was a dream!  I had an ultrasound at 16 weeks and they found no concerns.  I remember the doctor asking me if I felt I needed another ultrasound and I didn't feel I did.  I thought, I've been through this before, the baby is active and I feel great!  An ultrasound after 20 weeks, the Spina Bifida would likely have been noticed.

I had laboured for 23 hours when the doctor came in and said she wasn't responding properly to the contractions and it was time I had a c-section.  It was a blessing I did because if I would have delivered her naturally, she might have had brain and more nerve damage.  We were told she had Spina Bifida and she would be sent to Sick Kids in Toronto for surgery to close her spine.  We also found out Rylie has Hydrocephalus.   Seven days after her surgery to close her back, she had surgery to put in a shunt.  The shunt drains the fluid that collects in the ventricles of her brain and its reabsorbed in her abdomen.

Rylie, just after back surgery

Big Sister Erin & Rylie just after her shunt surgery

Two weeks after being admitted to Sick Kids, we welcomed her home.  Our Spina Bifida Story was just beginning....

Looking back to almost 13 year ago, I remember how scared I was.  For our daughter but also for us.  What challenges will she face?  What kind of parents will we be?  Can we provide the best for this precious little girl?  We've had challenges but many,  MANY more joys and accomplishments!  Somehow you just get through it.  You just do!  Because this little baby is yours to protect, take care of and provide the best you can!

I can tell you our entire Spina Bifida Story so far which includes therapies, testing, surgeries, etc. but I feel to lay it all out is like a mom telling a pregnant woman her unsolicited challenging birth story.  EVERY story is different!  I certainly don't mind sharing most things we've been through and welcome the opportunity to pass on what we've learned along the way.   Anything you want to ask, please don't hesitate.

2012 - Rylie ALMOST A TEEN!