There is no cure for Spina Bifida. Ongoing therapy, medical care and/or surgical treatments will be necessary to help prevent and manage complications and secondary conditions throughout an individual's life. Just fifty years ago, only 10% of babies born with spina bifida survived their first year. Today, with research and advances in medical technology, 90% survive and thrive!
Oliver has Myelomeningocele which is the most severe form of Spina Bifida, in which the spinal cord protrudes from the opening in the spine. In utero SB babies bodies produce too much cerebrospinal fluid as it leaks out of the opening on their back. When people with Spina Bifida have spinal surgery like Oliver did at one day old to put his spinal cord back into his spine. Their bodies then need to just to producing less cerebrospinal fluid or else hydrocephalus occurs.
Many babies born with spina bifida get hydrocephalus. This means that there is extra cerebrospinal fluid (CSF) in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. There is no cure, but hydrocephalus can be managed with surgery. As Oliver’s head circumference and ventricles are increasing in size a shunt needs to be put in place. A shunt is a medical device that relieves pressure on the brain caused by fluid accumulation.
Oliver will be having a shunt put in place on July 11. We knew this was a surgery he would mostly likely have to have (which doesn't make it any easier) and we are glad that he has been able to go 5 1/2 months without one, as the older the baby is the more beneficial the surgery can be. We will not be able to see if Oliver is a candidate for the ETV procedure like we would have like to because Oliver’s Nuerosurgeon Dr Riva-Cambrin is on holidays. Dr Riva-Cambrin is one of the only Neurosurgeons that does the ETV surgery in Canada. The neurosurgeon team do not feel like Oliver can wait for his neurosurgeon to get back in 3-4 weeks. Which is kinda discouraging. Everything with Oliver has worked out so far, so we are trying to have faith that things will keep working out the way they are supposed to. Even if it’s not how we thought it to go. We feel that our heavenly father is watching closely over Oliver. With all that he has gone through so far it has all gone very smoothly. I know and feel that this is something that Oliver needs at this time for him too thrive in life to the best of his capably. I am thankful that we live in Canada and have access to such great health care and amazing doctors. Oliver has a special spirit about him and we love him so much. He has blessed our family in so many ways.
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