What Is Spina Bifida?

Spina Bifida? What??  Spina Bifida is where the spinal column does not close all the way. There are different types of spina bifida: Occulta, myelomeningocele, meningocele.

Brenden has myelomeningocele Rachischisis which bascially he was born with an opening on his back. No sac, just an open hole. As seen below. 

Hydrocephalus is also known as "water on the brain" and is extra fluid that makes a babies head bigger so they need a shunt to be placed. Explained below.



Look at all that hair! Too bad it didn't last very long :(

I never got to see it in person. My social worker took the picture and printed it out for us. When I seen him in the delivery room he was wrapped in his plastic bag (so it looked like) and in his blanket. Then once he was back in the NICU he was covered by gauze and everything.

Having spina bifida can come with different complications.. they may never be able to walk, some walk with walkers, some walk without any support but can't for a long amount of time. They could get hydrocephalus and need shunted-which also comes with it's own risks.
They also may have bowel and bladder problems and may need to be catheterized every x amount of hours a day. They can have neurological problems and there's more things that are involved (there's probably things that I don't even know about yet!)
You just have to "hope for the best, expect the worst" so I've heard a lot since I've been out here..

Brenden has been seen by all of these specialist below, except speech.

Orthopedists monitor growth and development of bones, muscles, and joints. (Every 6 months)

Neurosurgeons perform surgeries at birth and manage complications associated with tethered cord and hydrocephalus. (Every 3 months, for now.)

Urologists to address kidney, bladder, and bowel dysfunction - many will need to manage their urinary systems with a program of catheterization. Bowel management programs aimed at improving elimination are also designed. Brenden does NOT need catheterized. He can pee on his own. They did different tests to check for this. (Every 5-6 months)

Ophthalmologists evaluate and treat complications of the eyes. (Has only seen him once)

Orthotists design and customize various types of assistive technology, including braces, crutches, walkers, and wheelchairs to aid in mobility. As a general rule, the higher the level of the spina bifida defect, the more severe the paralysis, but paralysis does not always occur. Thus, those with low levels may need only short leg braces, whereas those with higher levels do best with a wheelchair, and some may be able to walk unaided. Brenden's lesion is very low. L5 S1 . He can feel his feet and move them.

Physical therapists, occupational therapists, and speech/language pathologists aid in rehabilitative therapies and increase independent living skills. (Has PT/OT 2 times a week)

Gastroenterologist- Brenden was only seen by this doctor one time. Just to make sure his poo and everything felt normal in his tummy. 



V/P Shunt- They put a catheter in the ventricles to drain the extra CSF and release pressure on the brain. Risks of a shunt are that it isn't working and then you may need a shunt revision (Brenden had one already) or it could get infected, or like in Brenden's case, it could get tissue growing inside of the tube. -_-

Brenden needed a shunt placed in three days after birth.

Had a shunt revision 5 months later.