Learning About SB: The Repair

  Here is another post from Amanda's I want to learn about spina bifida

Learning About SB: The Repair

I have a lot of people asking me how they fixed his back, but I didn’t really know how to answer. Then I found some pictures.

When you are pregnant, you wonder about what will happen in those first few days after he is born. And the answer is major surgery. A way to fix his back, this surgery will fix his back, but will not fix the nerves. In fact that first surgery can actually damage the nerves – that is one of the risks. But really there isn’t a choice.

A baby that was born with spina bifida has part of their spinal cords outside of their body and that needs to be cared for and repaired. It is called a myelomeningecele repair (MMC repair for short). Nickolas had his first major surgery when he was less than 24 hours old, and this surgery lasted almost 6 hours. I didn’t really know how it was repaired other than they put the spinal cord back in and covered it with muscle and skin. Well I found a couple of good pictures and thought – huh – this is how it was repaired (you learn something every day). Even though I had an idea, it was helpful to see pictures.

I do not have a picture of Nickolas’ lesion, I never thought of it at the time and wasn’t able to visit anyways (the joys of H1N1). There are pictures you can view online, some are large, some are small. But really it only looks like that for the first 24 hours and then it is repaired.

Nickolas has quite a big scar. and one part of it got infected, so it didn't heal very well, he stayed on his belly for 6 weeks until it cleared. And that part now has an indent of scar tissue when it healed. I think his scar looks beautiful now. I’m amazed at the work of the doctors, and his plastic surgeon.

Pictures came from: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/myelomeningocele/

Learning about SB: A mile-o-what?

From Amanda Riddings I want to learn about spina bifida blog

Learning about SB: A mile-o-what?


This is my first 'Spina Bifida Education Module' to help educate friends and family about spina bifida. I hope that these 'modules' will be posted over the month of June in celebration of Spina Bifida month. But don't worry! I will continue to post about the kiddies as well!

A myelomeningecele (pronounced my-low-men-ning-guh-seal). This is typically what spina bifida refers to, and is the most common type of spina bifida (there are 3 different types – also a meningecele and occulta). A Myelomeningecele is the most damaging, and this is what Nickolas was born with. This long word is what was wrong with my baby boy. In the hospital they shortened it to a MMC. Nickolas had an MMC repair – a lot easier to write out a million times in nursing notes.



I do not have a picture or know what Nicikolas’ looked like (I couldn’t visit because I had H1N1 and it never occurred to me to ask someone to take a picture), but I’ve seen other childrens. I was told by the neurosurgeon that Nickolas’ was 3 cm in diameter, but his scar is rather large (S shaped) compared to other children’s that I’ve seen.

This picture shows that the bones of the spine have split and allowed a sac to come out. The sac contains spinal fluid, the spinal cord (nerves) and meninges (tissue that covers the cord) to stick out and be exposed. Surgery is done (in Nickolas’ case) within 24 hours to replace the sac and nerves in the back and cover it with skin (I was surprised but the skin and muscle keep it in place, no other bone was put to cover what is missing).

As you can imagine it is delicate and major surgery that these kids go through and recover (amazingly) within their first few days of life. Even after surgery there has been damage to the nerves that are not, and cannot be repaired. The amount of damage done and what is affected depends on what nerves were damaged and what nerves passed through. Typically the level of the lesion (the hole) can determine what function is affected, but children may function at a different level than their lesion.

And usually there is a chart that typically gives an idea of mobility future and need for assistance with walking that goes along with the picture.

Nickolas’ sac/lesion/level is S1 when they did the surgery. We are still waiting to see what level he will function at (or not – who needs labels to say what they can and cannot do).

So that is my first quick-start education module – hope you liked it.

The spinal picture and walking chart were taken from http://www.spinabifidamoms.com/english/about.html

The picture of the myelomeningocele came from http://health.allrefer.com/pictures-images/spina-bifida-degrees-of-severity.html

Video on from I want to learn about Spina Bifida

Here is a post from Amanda Ridding's I want to learn about Spina Bifida blog

Excellent Video


Here is an excellent video of doctors who are participating in the MOMS study explaining spina bifida (myelomeningecele). The MOMS study stand for Management of Myelomeningocele Study and is in the US that is looking at the effects of prenatal surgery to repair the lesion. It has been going on for many years.

Pretty much at 25 weeks the mom (and baby) undergo surgery that would have been done on the baby within the first day or two to close the back. If you participate in the study you are randomly selected to either the postnatal surgery or the prenatal surgery group.

I found a video that is really excellent in explaining a myelomeningocele and everything that goes with it. If you are interested - please check it out!
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=1

This video explains how the postnatal repair is done - this is the surgery that is done on every baby that is not participating in the study (as well)
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=4

This video explains - and shows video - how the prenatal surgery is done. These pictures are amazing! It also reviews the risks and benefits of prenatal surgery
http://www.chop.edu/video/moms/management-myelomeningocele-study.html?item=5