MEDICAL DESCRIPTION
- Spina bifida is a very common birth defect. Many cases of spina bifida may be prevented by the consumption of vitamins containing folic acid before and during pregnancy. A child born with spina bifida has an opening in the spine as a result of the spinal column not closing completely during the first month of pregnancy.
THREE TYPES OF SPINA BIFIDA
- Occulta, the mildest form, involves an opening into the vertebrae without a protrusion of the spinal cord or meninges. Many people do not know they have this. There may be a large mole, a patch of hair, or a deep dimple on the skin along the spine.
- In the Meningocele type, the spinal cord has developed normally, but when the child is born there is a sac protruding from a hole in the vertebrae and out of the back. It is important to have surgery early as the sac may break and infection and nerve damage may occur. Often this form of spina bifida does not present any problems once the back is closed.
- In Myelomeningocele (Meningomyelocele), the most common form and the most serious, the protruding sac contains tissue, spinal fluid, nerves and part of the spinal cord. The spinal cord is damaged or not properly developed. There is always some degree of paralysis and loss of sensation below the damaged vertebrae. The amount of disability depends on where the spina bifida is and the amount of nerve damage involved. Many children have problems with bowel and bladder control. They may need a walker or wheelchair, depending on the level of paralysis.
- Most children born with spina bifida can live normal lives. Some children with spina bifida have problems such as curvatures in the back, hip dislocations, ankle and foot deformities and contracted muscles. Some children may have problem with bowel and bladder control. Some children may break their bones easily since their bones may be weaker than normal.
- Most children with spina bifida and/or hydrocephalus have normal intelligence.
TREATMENT
- A child with this condition should be seen immediately by a doctor.
- It is important to prevent infection and to protect the spinal cord and nerves that are exposed outside of the body.
- Babies born with a meningocele or a myelomeningocele need surgery to close the defect. Early surgery is important to prevent a loss of function due to damaged nerves.
- Placement of a shunt to drain fluid off the brain may be required for those children with the more severe form of myelomeningocele who have hydrocephalus.
- Not all babies will require surgical repair of spina bifida.
- Other treatment involves physical therapy to prevent or treat deformities and assist function. Positioning aids in chairs and bed, such as pillows, cushions and specially made equipment, will help the child lie, sit or stand. Braces or splints are used to prevent deformity, promote support and protection from damage.
- Special attention needs to be given to skin care as bed sores and/or infection may occur due to the child’s lack of sensation. Turning the child in bed and repositioning them when sitting every two hours will prevent bed sores caused by pressure. If reddened or white areas appear on the skin, they may be massaged to bring circulation back to the area. The skin should be kept clean and dry.
- Encourage children to assist in their care to promote independence.
*Medical information courtesy of LoveWithoutBoundaries.com.
Testimonials
KELLEY FAMILY
“Everyone at AGCI was extremely helpful and walked us through every step of the way. We had a lot of questions and all of our questions were answered as the process went along. We knew exactly what was expected in the process due to the extremely organized and well managed AGCI staff. Even when we traveled to China, I was amazed at how smooth everything went. Our guide was extremely helpful and was able to take us exactly where we needed to go and let us know what we would need when we got there. Since we picked Joshua off the waiting child list our adoption was completed within 9 months. I was very pleased it went that quickly.
Since Joshua had a medical condition called spina bifida, this added a new dimension to the adoption. We had medical questions and concerns. We were able to access his medical history through AGCI and have a doctor review it before we committed fully to the adoption. All medical facts were disclosed in the paperwork we received and there were no surprises as far as health goes. When we received Joshua, it was like he had always been ours from birth even though he was 3 ½ years old when we adopted him. He has adjusted well to our family and is a treasure to us all! We highly recommend adoption and adopting through AGCI especially!”