Spina Bifida

I have come to realize that many people do not know what spina bifida is. Spina bifida is a neural tube birth defect in which there is abnormal development of the backbone, spinal cord, surrounding nerves, and the fluid sac surrounding the spinal cord. This sounds very scary, I know! This defect can occur anywhere along the spine. We believe, based on information in her records, that Claire's defect is at the base of her spine, which is the more common place for it.

There are several forms of spina bifida that range in severity from mild to serious. Spina bifida occulta is the mildest form and may not be diagnosed right away because there are not always signs of it. A meningocele is a fluid filled sac visible outside the back but not containing the spinal cord or any nerves. Claire has one of the more complicated forms. She was born with myelomeningocele, which means that part of her spinal cord and nerves developed outside her body and were contained in a fluid filled sac. Some common issues with this form of spina bifida include weakness and loss of sensation below the defect, problems with bowel and bladder function and hydrocephalus.

Another issue with this diagnosis is tethered cord. This is when the the spinal cord becomes tethered or attached to the bony spine. Sometimes this happens because of scar tissue after the surgery is done to close the spine. Obviously this will cause tension on the spinal cord and can cause permanent damage to the muscles and nerves that control the legs, feet, bowels and bladder. It can be surgically untethered but early detection is the key. Foot deformities also occur with the form of spina bifida that Claire has and according to her records she has what appears to be a type of club foot of both her feet.

Spina bifida can be caused by genetic and environmental factors. It is more commonly seen in teenage mothers and lower socioeconomic families. Poor nutrition and lack of vitamins is thought to contribute to this and research has found that folic acid can help reduce the risk of neural tube defects. Exposure to hazardous chemicals and infections can also be risk factors. It is not curable but it is manageable with proper medical care.

Claire's records stated that she has "slightly increased muscular tension" and "slightly poor nervous reflex". The good news is that she still has muscle tension and reflex so she is not paralyzed! As you can see in her picture, she can sit up and her growth report said that she could stand. It is unknown at this time if she can walk and if she can't is it because her legs aren't working or because her feet are deformed.

There is nothing in her file indicating that she has any form of hydrocephalus but we will still need to have her checked for this. The treatment to alleviate the build up of fluid in her brain would be to put a shunt in. Since she does not have a shunt, she may suffer more neurological damage from untreated hydrocephalus.

We have many concerns for our new daughter but our hope is that her quality of life will be greatly enhanced once she is surrounded by the love and support of her new family. It is obvious that she needs the attention of a neurologist and an orthopedist and probably a urologist. She will likely need numerous therapies and possibly some surgery. But, we know that we were chosen for each other for a reason. We pray everyday for her safe keeping and her physical healing and we can't wait to get her in our arms and bring her home!