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Adopting a Child with Spina Bifida

Special Needs Adoption Spina Bifida China

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  Written by Patricia Marcus on 30 Sep 2014

Today we are exploring the special need: Spina Bifida. This is a common need in children who are waiting to find an adoptive family.

To define the term Spina Bifida it means split spine.  In prenatal development the bones of the spine join together to form a protective circle around the spinal cord.  The Spinal cord is made up of nerves from the body that relay messages between further centers/places in the body and the brain.  The spinal cord and the brain is covered in  layered membrane called the meninges.  When the bones around the spinal cord do not fuse and connect, the nerves, or just the membrane may protrude through the opening causing damage.  Sometimes only the membrane protrudes through the opening.    Because there are several types of Spina Bifida.  The statistics varry between  reference sites and are not very helpful in understanding the disorder.

The cause of Spina Bifida is unknown.  It is believed to be a combination of environmental and heredity factors.  In the United States women considering having children are encouraged to supplement their folic acid intake in the period prior to conception and during the pregnancy.

There are four types of Spina Bifida.

Occult Spinal Dysraphism (OSD)

Infants with this have a dimple in their lower back.  Other signs include red marks, hyperpigmented patches on the back, tufts of hair or small lumps. In OSD the spinal cord may develope incorrectly and can cause issues for a child.

Spina Bifida Occulta

It is often called hidden Spina Bifida.   About 15 percent of healthy people have this.   Spina Bifida Occulta may have no visible signs and the spinal cord and nerves may be unaffected.  Individuals may discover they have this after having an X-ray of their back for an unrelated reason.  There may be some symptoms or very few symptoms with this type.  The spinal cord can be tethered or not free with in the membranes.  This can cause issues with the nerves and may require a surgery to free up the spinal cord. 

Spina Bifida Meningocele

This is where only the membranes are through the opening.  There can be some issues associated with this.  There may be problems with the fluid that circulates around the nerves, spinal cord and brain.  treatment for this type of Spina Bifida is surgical.  The meningocele is closed and shunts may be needed to help fluid drain.  Shunts are  tubes can be placed to drain the fluid from the brain into the chest cavity or the abdomen.  A shunt may need to be replaced if it clogs or as the child grows.

 Spina Bifida Myelomeningocele 

In this type of Spina Bifida the spinal cord and nerves come through the open part of the spine.  There will be a bulge in the back area over the spine. It causes nerve damage and other disabilities. a large percentage of individuals with this type of Spina Bifida will have issues with the fluid that circulates around the spinal cord and brain. If the fluid is unable to drain properly, the fluid can build up and cause pressure on the brain.  If this is not treated the pressure can damage the brain.  This might be called hydrocephalus or watery head on a waiting child list.Hydrocephlus can occur with out Spina Bifida as well.    The Myelomeningocele is usually closed very soon after birth.  A shunt may be placed at the same time.  These shunts may need changing as well.

General treatment is based on the nerve damage that has occurred.  Mobility, or walking and moving around, can be a significant issue for children with Myelocele or Myelomeningocele.  There are other complications that include, difficulty with urination and/or defecation.  Children may need a bowel and bladder program  or other assistance to eliminate bodily waste.  A child may develop a latex allergy due to multiple medical procedures, catheterization or shunts.  There is a possibility of gastrointestinal (stomach and intestinal) issues.  Some children who have limited activity can become over weight or develope pressure sores.

The good news is that outside complications children can have a normal life span.  Depending on nerve damage, these wonderful children may be able to do everything or need a wheel chair.  They may do everything but it may look different.  SOmetimes braces are required to help the child negotiate.  Excessive fluid that presses on the brain may interfere with intellectual development but if properly managed they may do exceptionally well.

These are many needs to address but adopting a child with Spina Bifida may be an amazing experience for you and your family.  So, could you parent a child with Spina Bifida?

Author Patricia Marcus is a loving child-advocate. Through SuperKids Charity and Gladney Adoption she travels to evaluate waiting children in China.

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