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Spina Bifida

I've known Heaven Leigh Caviness since she was born. Not well, but I knew her family. Her Dad worships her, and we guess her mother does too. The family moved next door to me when Heaven was a little over 3 years old. She was born with Spina Bifida with hydrocephalus. She's been in a wheel-chair her entire life. Heaven attended public schools until a year ago this month, August, 2004. Early that August morning, she was life-flighted to a Tulsa hospital. Her dad said she was really bad. As a matter of fact, the prognosis was very slim that she would survive this time.Her shunt had come loose somehow. Heaven remarkably came around little by little. She has to still be fed through a tube, and she can't talk, but she has learned sign language, and she'll make you understand her. God bless her she's home and got to come home in March, 2005. In that hospital for 8 months. Dad only left her one day a week all that time. Her mother and dad got a divorce about 4 years ago. Mom said she couldn't handle the caretaking of her, so dad got custody. You know, it takes a hell of a good man to take care of, carry everywhere she needs to go out of her wheel-chair, and never leave her. I have to give Roy all the praise he deserves. I've noticed the public handicapped school bus stopping at her house about 10 a.m. and returning about 2:30 p.m. So, I guess Heaven is trying school again. You really have to admire this little 12 year old. She never says "I can't", and dad tells her, "You can do anything everyone else does."

And, here is another story from a dear friend, Cyndi. Please read her experience with this disease, in any form.

My experience:
I never had any problems with ANYTHING my entire life,
thought I was as healthy as a horse...lol
Then, when I was 17 and became pregnant, for the first time I had pain that nearly took my breath away, and I cried and cried. I thought, I just have a bad back! Occasionally, I would see a chiropractor. I saw this one that took x rays about 10 years after the first incidence happened, and I was told that I had Kyphosis (my bones had turned backwards in my spine due to disabling muscle spasms.) This went on for years. I had a job in the spring of 2001 that was pretty manual...had me on my feet alot...then I started losing alot of work because my back would "go out" due to these spasms. In the summer of 2001 I was told to quit seeing chiropractors after this one took my ankles and jerked hard enough to pull my back out for good....this guy kept saying, I'm gonna send you for x rays if I don't figure this out soon, (And me? I went on complete blind faith that HE, a DOCTOR, could help me. Now the pain is DAILY...Prescription meds don't help...showers/baths (let alone getting out of them...My spinal canal has become much narrower in the last 20 years...and now, I can't feel when I'm going to fall/my ankles are gonna give. It's like standing up and your feet are asleep and you didn't know it! I saw a Doctor of Osteopathy and was told to go to a hospital for xrays. This is the first time I heard that I had SB-Occulta...not just a bad back. I began seeing a D.O in the town I live in and had an MRI done and was told that I had SB and now Degenerative Joint Disease. I have always had a "bad bladder" but didnt know why (just thought, I shouldnt drink black tea, as it is hard on your bladder). Also during the last few years though, it has gotten to the point that I dont "know" i have to go. I will stand up to go to comb my hair, and all of a sudden I am "going then and there". The doctors I've seen in the last year have tried me on the common meds for bladder incontinence (Detrol and Ditropan) but they dont help "me". When I went for the hearing, the ALJ said that bladder control isnt a problem and that drugs will help me, then denied me...said he didnt believe i was in as much pain as I said I was in. The other thing is that NO ONE in my family has SB, or DJD or anything other than arthritis. SB even in the mild form of SB occulta can be quite disabling! The government doesn't see it that way, but it IS. I have been trying for over 3 years to get disability, but, SB occulta isn't on their list of allowable problems so I have been turned down now 4 times.

Definition

Spina Bifida is a developmental anomaly characterized by defective closure of the bony encasement of the spinal cord through which the spinal cord and meninges may or may not protrude. If the anomaly is not visible, the condition is called spina bifida occulta. If there is an external protrusion of the saclike structure, the condition is called spina bifida cystica, and is further classified according to extent of neural involvement (e.g., meningocele, meningomyelocele, or myelomeningocele).

Description

Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the U.S. More children are affected by this condition than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined. Spina bifida is a disabling birth defect of the spinal column resulting from the failure of the spinal column to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back. The condition may cause varying degrees of paralysis and loss of feeling in the lower limbs, and bowel and bladder complications. A large percentage of children born with spina bifida have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called shunting which relieves the fluid buildup in the brain by redirecting it to the abdominal area. Spina bifida occulta is a usually harmless form of spina bifida in which there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. The spinal cord and nerves are usually normal, and most affected individuals have no problems caused by this minor abnormality. Meningocele is the rarest form of spina bifida in which a cyst or lump consisting of membranes surrounding the spinal cord pokes through the open part of the spine. The spinal cord and the nerves are usually normal. The cyst, which can be as small as a nut or as large as a grapefruit, can be removed by surgery, allowing the baby to develop normally. Meningomyelocele is the most severe form of spina bifida. In this form, the cyst holds nerve roots of the spinal cord and often the cord itself. Or there may be no cyst, but only a fully exposed section of the spinal cord and nerves. Spinal fluid may leak out, and the area often is covered with sores. Affected babies are at high risk of infection until the back is closed surgically. In spite of surgery, varying degrees of leg paralysis and bladder and bowel control problems remain.

Causes

The most important risk factor for spina bifida is poor nutrition, especially a diet deficient in folic acid. There appears to be factors other than nutrition in the development of spina bifida. Genetics also seems to play a role. People of Northern European and Hungarian ancestry have the highest rates of the disease, and the condition tends to run in families, though not consistently. In fact, 90 to 95 percent of children with spina bifida are born to women who have no other children or anyone in the family with the defect.

Treatment

Meningocele, which does not involve the spinal cord, can usually be repaired surgically to preserve normal spinal function. When a baby is born with the severest form of spina bifida, it usually is operated on at once - within 48 hours after birth. Doctors surgically release the spinal cord, replace it in the spinal canal and cover it with muscle and skin. Even so, limb paralysis and bowel problems usually remain. Specialists in orthopedics and urology are asked to treat these problems. As soon after the operation as possible, a physical therapist teaches the parents how to exercise their baby's legs and feet to prepare for walking with leg braces and crutches. Some children need a wheelchair. If the child develops hydrocephalus, fluid can be drained from the brain through surgical placement of a shunt. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly through the child's body. With treatment, children with spina bifida usually can become active individuals. Most are able to have children, although such a pregnancy is considered "high risk."

Prevention

The United States Public Health Service since 1992 has recommended that all women of childbearing age who are capable of becoming pregnant should consume 0.4 mg of folic acid per day for the purpose of reducing their risk of having a pregnancy affected with spina bifida or other neural tube defects. Folic acid is found in foods such as cereals, broccoli, spinach and con. It is also available as a vitamin supplement. Over the last few years, it has become apparent that folic acid can reduce by about 50 percent the risk of having a newborn with spina bifida. Unfortunately, many women do not eat enough folic acid-containing foods (such as leafy vegetables and citrus fruits). For this reason, the U.S. Food and Drug Administration is planning to require that flour, breads, rolls, buns, corn meal and grits, farina, rice, macaroni, and noodle products should be fortified with folic acid. It is considering whether to allow labels of foods that are good sources of folate to state that such foods can help reduce the risk of neural tube defects, and the same claim could be made on dietary supplements, such as multivitamins. However, women should realize that it is important that they consume the vitamin every day, whether they are planning a pregnancy or not. Folic acid appears to work around the time of conception, so if women wait to start folic acid until they know they are pregnant, it is too late for the vitamin to offer benefit.

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