Leah's Diagnosis

Spina Bifida occurs when the baby’s spine fails to close during the first weeks of pregnancy, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back..  The point along the spinal cord where the undeveloped area occurs is called the level or lesion of the Spina Bifida.  Leah's lesion is approximately L2-L4, which means that it's on her Lumbar region.  Her lesion is fairly high, which generally means that more nerves will have damage.  

Spina Bifida causes pressure on the entire spinal column, therefore the brain tends to be positioned further down into the upper spinal column than it should be.  This change in position is part of a condition called the Chiari Malformation.  The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid, leading to a build-up of fluid within the ventricles of the brain, called hydrocephalus.  Right now Leah's ventricles are within normal range, but they are at the high end of normal. 

Very soon after she is born (within 48 hours), Leah will have surgery to close the opening in her back, and she will be in the NICU for about 2 weeks in recovery.  The surgery disrupts the flow of spinal fluid, so it is highly likely that she will develop hydrocephalus soon after surgery.  This can be fixed with a shunt that will help drain her fluid. 

In terms of her development, we just have to wait and see.  A lesion at L2-L4 generally means that she'll have movement in her hips and maybe down to her knees.  The Chiari Malformation affects the cerebellum, a part of the brain that controls swallowing, breathing, and fine motor skills.  BUT all kids with SB are different, and there is no way to predict what she will and won't be able to do. 

One of the best pieces of advice we got was not to go out and Google any of this.  There is a lot of information out on the internet that is outdated or that paint an overly grim picture or just plain wrong.  Technology has come A LONG way in a short period of time for people with SB.  I try to stick to the sites of medical hospitals that specialize in SB research, like UC - San Francisco, Vanderbilt, and Children's Hospital of Philadelphia (CHOP), and the SB Association. 

The good news is that carrying a baby with Spina Bifida is no more risky to me than a "regular" baby.  Spina Bifida doesn't affect her time cooking, so she should go to full term.  And in fact, my doctors want her to develop for as long as she can, so she can be strong for her surgery.  The other good news is that she's already developing a little personality.  She likes when the cats lay on my lap and purr.  And she doesn't like getting her picture taken at my regular ultrasounds.  What else will she be like?  We just have to wait and see.