Spina Bifida Awareness day 13

How is spina bifida treated?

There is no cure for spina bifida, and there is no set standard for care. each individual  is exactly that... and individual. Here is just a surface glimpse of what care and treatment might be given.

The nerve tissue that is damaged or lost cannot be repaired or replaced, nor can function be restored to the damaged nerves.  Treatment depends on the type and severity of the disorder.  Generally, children with the mild form need no treatment, although some may require surgery as they grow.

The key early priorities for treating myelomeningocele are to prevent infection from developing through the exposed nerves and tissue through the spine defect, and to protect the exposed nerves and structures from additional trauma.  Typically, a child born with spina bifida will have surgery to close the defect and minimize the risk of infection or further trauma within the first few days of life.

Selected medical centers continue to perform fetal surgery for treatment of myelomengocele through a National Institute protocol (Management of Myelomeningocele Study, or MOMS).  Fetal surgery is performed in utero (within the uterus) and involves opening the mother's abdomen and uterus and sewing shut the abnormal opening over the developing baby's spinal cord.  Some doctors believe the earlier the defect is corrected, the better the baby's outcome.  Although the procedure cannot restore lost neurological function, it may prevent additional losses from occurring. There are risks to the fetus as well as to the mother.  The major risks to the fetus are those that might occur if the surgery stimulates premature delivery.  Still, the benefits of fetal surgery are promising, and include less exposure of the vulnerable spinal nerve tissue and bones to the intrauterine environment, in particular the amniotic fluid, which is considered toxic.   As an added benefit, doctors have discovered that the procedure affects the way the fetal hindbrain develops in the uterus, allowing certain complications—such as Chiari II and hydrocephalus—to correct themselves, thus, reducing or, in some cases, eliminating the need for surgery to implant a shunt.

Twenty to to 50 percent of children with myelomeningocele develop a condition called progressive tethering, or tethered cord syndrome,  in which their distal spinal cords become fastened to an immovable structure—such as overlying membranes and vertebrae—causing the spinal cord to become abnormally stretched and the vertebrae elongated with growth and movement.  This condition can cause change in the muscle function of  the legs, as well as changes in bowel and bladder function.  Early surgery on the spinal cord may allow the child to regain a normal level of functioning and prevent further neurological deterioration.

Some children will need subsequent surgeries to manage problems with the feet, hips, or spine. 

Individuals with hydrocephalus generally will require additional surgeries to replace the shunt, which can be outgrown or become clogged.

Some individuals with spina bifida require assistive mobility devices such as braces, crutches, or wheelchairs.  The location of the malformation on the spine often indicates the type of assistive devices needed.  Children with a defect high on the spine and more extensive paralysis will often require a wheelchair, while those with a defect lower on the spine may be able to use crutches, bladder catherizations, leg braces, or walkers.  Beginning special exercises for the legs and feet at an early age may help prepare the child for walking those those braces or crutches when he or she is older.

Treatment of bladder and bowel problems typically begins soon after birth, and may include bladder catheterizations and bowel management regimens. 

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Now let's take it a little further and make it personal. I want to  help you understand our particular situation a little better.

Carson had post natal closure of the spine at 1 day old. I was 32 weeks when we discovered his spina bifida and that was too late for the womb surgery to be performed. I have friends who participated in both sides of the MOMS trial, and the results vary favorably and unfavorably.  Carson's hydrocephalus was very mild at birth and a shunt was not needed. However, it slowly increased and at the judgment call of his neurosurgeon a shunt was placed just after his first birthday. We currently have physical therapy 3 days of week... Our primary goal right now is weight-bearing. In order for Carson to weight bear he is placed in a supine stander. 

 

This is the particular one that we use. Carson is laid on his back in the stander... We strap him in and then raise him to a standing position (full weight bear) His body is fully supported. We also currently have one day of developmental therapy with a teacher. She works on speech, and fine motor skills. We will be beginning aquatic therapy and/or hippo therapy shortly after Carson's 2nd birthday. As far as bracing goes we are currently in the process of getting setup with shriners hospital. Carson will be using a HKAFO for bracing. The initials literally spell out what it is- Hip Knee Ankle Foot Orthotic.

This picture isn't great but gives you the general idea.

This means that he will be braced from foot to hip. This is an area that we covet your prayers in. First that we could quickly get him braced, and second that the bracing would suit him well. Our third prayer request would be that we could graduate to less bracing- this would happen if Carson gained strength. Of course I get asked frequently if Carson will be able to walk.  That's another area to pray with us about. If you had asked me a year ago I would tell you "YES" and that we were going to do everything possible to make that happen. Now I would tell you that "He might" I learned this last year (both through research and speaking with individuals who have spina bifida) that sometimes it is worse on their bodies to force walking and you do more permanent damage for a temporary time of walking. It's a tough question to answer. We just  have to wait and see. It is our prayer that Carson reach his full potential and that we do everything we can to give him the best opportunities. It may be hard for you to understand this but we are totally fine if Carson only uses his wheelchair. . We have come to realize that individuals are not handicapped by their wheelchair. It's all about their attitude and spirit. Our prayer is that Carson have a joyful, independent, and godly spirit. We know that if he develops those three things then he will have happiness and true success regardless of his mobility status.

I hope that I helped you understand a little better. :) It's pretty crazy when you write it all out. My summary to all this info overload would be.... God is good, and regardless of what spina bifida literally may mean on paper it's not practical, and it's not really something we ever think much about. It's not our focus... The practical truth is I'm concluding this post to go tuck Carson into bed. We will read a book, pray together, sing a song, give upteen kisses and hugs, and then snuggle. What could be better than that?

Goodnight everyone. :)