It’s a condition most people aren’t aware of by name. Many people see persons with different birth defects as they’re classified, and don’t have a clue. A lot of persons just think that the person’s mental ability is limited and so too their mobility. I can identify only one person I know personally who was born with such a “defect”.
Although she has gone to meet her maker now, Catherine was God’s special gift. Though she experienced many, many challenges in life, she was a warrior; a lover of life. She defied many odds, came through many surgeries, but she fought.
Cat or Cathy, as she was fondly called, was bold, loving, deeply spiritual, had an infectious smile and laugh, and was extremely intelligent and talented … a creative soul. My first encounter with her was an eye opener; as she exited her driveway I thought she’s going to fall with these two metal support canes. I rushed to open the car door as in my mind this would be a challenge for her and she must be in so much pain. I was so wrong!
We got to the ITNAC fundraiser and I thought this would be an interesting night, and that it was. I was amazed to see Catherine up and down, full of excitement and laughter. Her poetry skills were out of this world and so too her ability to dance. Strongly opinionated, she and my mom would have disagreements at times but Cathy was always up for it, admitting that she was sometimes quite stubborn. In looking back, her weaknesses were also her strengths, and I admired her for her resilience. The question is, what is this condition?
Spina Bifida…What is it?
Spina bifida is a birth defect. Some children who have spina bifida do not have problems from it. It occurs when the bones of the spine (vertebrae) do not form properly around part of the baby’s spinal cord. It can affect how the skin on the back looks. And in severe cases, it can make walking or daily activities hard to do without the aid of a person or an assistive device.
Spina bifida occurs in three forms, each varying in severity:
Spina Bifida Occulta
This mildest form results in a small separation or gap in one or more of the bones (vertebrae) of the spine. Because the spinal nerves usually aren’t involved, most children with this form of spina bifida have no signs or symptoms and experience no neurological problems. Visible indications of spina bifida occulta can sometimes be seen on the newborn’s skin above the spinal defect, including:
- An abnormal tuft of hair
- A collection of fat
- A small dimple or a birthmark
- Skin discoloration
Many people who have spina bifida occulta don’t even know it, unless the condition is discovered during an X-ray or other imaging test done for unrelated reasons.
In this rare form, the protective membranes around the spinal cord (meninges) push out through the opening in the vertebrae. Because the spinal cord develops normally, these membranes can be removed by surgery with little or no damage to nerve pathways.
Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term “spina bifida.”
In myelomeningocele the baby’s spinal canal remains open along several vertebrae, in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby’s back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.
The exact cause of this birth defect is not known. Experts think that genes and the environment are part of the cause. Women with folic acid deficiencies, who are obese or have diabetes, are also more likely to have a child with spina bifida.
Treatment depends on how severe the defect is. If a child has severe defects, they may need surgery. If your child has problems from nerve damage, he or she may need a brace or a wheelchair, physical therapy, occupational therapy or other aids.
There are things you can do to support your child:
- Help your child be active and eat healthy foods.
- If your child has little or no feeling in the limbs and can’t sense pain, he or she may get injured and not know it. You need to check your child’s skin each day for cuts, bruises, or other sores.
- Ask for help from support groups, family, and friends when you need it.
Orthopaedic difficulties or issues with bones and muscles may occur. Some people experience continual pain in the legs and lower back. The pain is usually on one side of the body and is located in the lower back, buttocks and back of the thigh muscles. Curves of the spine may occur. The curves may be sideways from the middle of the spine (scoliosis) or bowed like that of a hunchback (kypohosis). Scoliosis of the spine may lead to difficulties with balance.
Individuals with spina bifida occulta may experience reduced feeling in the legs and feet. The toes may tingle or become numb. In addition, the feet or legs may be of unequal length. The Achilles tendon, which connects the muscle of the calf to the heel bone, may be short and need surgery to lengthen it. Ankles can become rigid and impossible to move sideways. As a result of orthopaedic problems, walking difficulties may develop, such as having a limpness of the feet when walking.
Muscles and Movement
Careful orthopaedic follow-up of Spina Bifida patients is required. Although the amount of movement and strength that the child has in the legs does not tend to change, increasing weight may cause progressive problems with walking. Also the action of tendons may not be balanced and result in joint deformities. This is due to some muscles working better than others and tending to pull the joint out of shape. Operations may be needed on the foot, ankle, knee or hip muscles, or on the joints themselves.
Persons who have movement of the knee or foot should be able to walk. In mild cases walking may be possible unaided. In other persons orthoses (splints) or calipers (support rods connected to the shoe on either side of the leg) may be needed. More severely affected persons may require a wheelchair. Even those who can walk with calipers may prefer to use a wheel chair when they are older. A word of encouragement … whatever the challenge, embrace positivity! Don’t view your condition as a life sentence.
Your feet mirror your general health . . . cherish them!