Myelomeningocele

For those that are interested, here is a little background on the type of Spina Bifida that Annabelle has.

Myelomeningocele is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Below are some pictures of Annabelle's back pre and post surgery. I apologize if this is hard for some to see. Our reason for posting them are two fold:

1. When we got the Spina Bifida diagnosis while pregnant we found it very helpful to seek out pictures, stories, etc. about SB. Seeing actual pictures (not drawings) helped us to understand a bit better what we were in for. It helped to take the shock away a bit when she was born because we had seen other children's lesions (both big and small). We hope these pictures as well as our blog documentation of her progress will be able to help other families who find themselves in a similar situation. It's not pretty to look at, but it is a part of Annabelle and us.

2. To provide friends and family with a better understanding of what her back looks like. We unfortunately will not be allowing people to hold her until her back is healed as it is very delicate. We hope that the pictures will be able to express that better than we could verbally.

This is how Belle (as I call her) or Gracie (as Branden calls her) or Flower (as the boys call her) back looked on the day she was born.

Day # 2 (1 day after her surgery)

Day # 9

Day # 14 (Discharge day)

The middle triangular area is the area that is still open and needs to heal / close. Because her lesion was more than 50% of her back it was difficult for the neurosurgeon to find enough skin to actually close the back. He is very hopeful that with good wound care, minimal disruption to the area and no infection the back will eventually close. If he doesn't see significant progress he will eventually call in a wound care team and possibly a plastic surgeon.

Please feel free to ask us any questions about what you have read or saw in these pictures. We want Annabelle to be proud of who she is and we plan to never be shy or secretive about her condition. It is our goal to embrace the path that God has chosen for her and our family.
summersfamily09@gmail.com