I don’t share our journey with Spina Bifida because I want people to feel sorry for us. I share it to bring awareness. October is Spina Bifida Awareness month!
Spina Bifida: means “split spine’. It occurs during the first month during pregnancy when the spinal column fails to close. At the opening, many of the body’s nerves are exposed and often times even protruding, causing damage to the body from that point down. Spina Bifida lesion must be closed by way of an intense spinal surgery. This can be done by Fetal Surgery (very high risk closure surgery performed between 21-25 week of pregnancy. It can potentially carry great benefit, but it is not an option for all Spina Bifida cases.) The other surgery option is Post Natal Surgery (closure surgery performed after birth. Muscles, tendons & skin are restored to cover the lesion. Nerve functions lost during pregnancy are not regained)
So now you know a little more than you did yesterday about Spina Bifida. We too are learning more everyday about our little boy. We love him so much and look forward to the light and happiness he brings with him every single day!
What’s this about a shunt? Due to pressures on the spine and brain, 80% Spina Bifida patients are also diagnosed with hydrocephalus, which is a build up of fluid in the brain. A brain shunt aids in the draining of the Cerebrospinal Fluid (CFS)… Oliver had his placed when he was 6 months old. At 20 months Oliver had his VP programable shunt adjusted so it would drain a little bit faster. This adjustment is done by a magnetic device... We do have to keep an eye out for shunt malfunctions. We do this by watching for his soft spot for bulging or sinking, measuring his head daily to make sure it’s growth wasn’t too fast, headaches, vomiting, lethargic, Irritability, and swelling or redness along the shunt tract. Watching for symptoms of a malfunction is a common worry for parents of children with Spina Bifida but thankfully this isn't a constant concern.
36% of children with Spina Bifida are given the chance to live! 64% are aborted… At the time of Oliver's diagnosis and the weeks to follow, we were asked multiple times if we wanted to end my pregnancy. That was never a choice for us. Yes the doctors gave us the absolute worse cases scenario, which was very hard to hear as parents. Sometimes life doesn't go as we have it planned. You just have to have faith, that everything will be okay. I couldn't image our family life without Oliver.
Spina bifida is often referred to as a “snowflake condition, meaning that it is different for every person depending where the lesion level is…Because every cause of Spina Bifida is different, there is a variety of complications - mobility concerns (There is a huge variety on how patients get around, walking with braces, walkers, wheelchairs), severe bowel and bladder issues, latex allergy, Arnold chiari malfunction (this occurs when the pressure on the brain causes the brain stem to extend into the spinal column, causing body to weakness and respiratory and sleep issues… Oliver has some paralysis of the lower limbs with little feeling, Oliver uses a wheelchair to get around and army crawls (using only his upper body). Oliver receives physical therapy to help him to be as independent as possible.
Did you
know? While neurosurgeons have come a long way with closure techniques to try
to provide patients with the best life possible. There is NO CURE for Spina
Bifida.
Taking
FOLIC ACID before becoming pregnant can prevent a portion of neural tube
defects. But this only applies to about 2/3 of patients. There is no known way to
completely prevent Spina Bifida…. I was taking prenatal vitamins for two years
when I got pregnant with Oliver.
These kids may have a few difficulties that other kids don't have, but they're really amazing kids. Oliver has worked super hard for an incredibly long time to master skills/ reach milestones. “It's all they know so it doesn't get them down, it doesn't slow them down or stop them, this is what they know, this is what they do.” Oliver does it with a smile and positive attitude. Oliver has shown me what life is truly all about. I wouldn’t change a thing. You are perfect to me. Thank you for being you. It is an honour to be on this Spina Bifida journey beside you.
