What is Spina Bifida?
Spina bifida means discrete or open spine. It is one of the most common congenital diseases. Spina bifida can be seen in many ways affecting the spinal cord, especially myelomeningocele.
If you have spina bifida, something went wrong during the development of your spinal cord before your birth. In general, the spinal cord is a closed tube of nerves. These nerves move the muscles by transmitting orders from your brain to the nerves in your muscles. It also makes us feel these nerves. If the baby is born with spina bifida, this tube called the spinal cord is not closed. Therefore, the spine and skin covering the spinal cord are also not closed. The baby was born with an opening in his back and has difficulty in passing orders through his nerves. When there is no proper connection between the nerves and the brain, various degrees of paralysis (loss or inability to move and feel) occur.
Which nerves are affected depends on where the back opening is located. The higher the opening in the back, the more nerves are affected and the more severe the paralysis is. Therefore, some people with spina bifida use no or few devices, while others have to use a wheelchair. The affected muscles are not the only muscles to move, but the muscles that control urine and feces are involved in many patients.
Hydrocephalus is also seen in more than 85% of patients with spina bifida. Hydrocephalus is the excessive increase of fluid circulating in the brain and spinal cord as a result of disruption of this circulation and causing high pressure in the cavities within the brain. In infants, the head bones are not yet fully hardened and the head grows to try to reduce this pressure. However, if not treated in the early period, the brain will be damaged. If the development of hydrocephalus and brain damage can be prevented by timely treatment, the intelligence of children with spina bifida is not different from normal.
How does it occur?
This is a very important question that we are trying to answer today. The only thing we know is that no one's to blame for a baby being born with spina bifida.
A vitamin B group (folic acid) may have a role. Folic acid is believed to help close the spinal cord tube. If the mother does not have enough folic acid, the baby's spinal cord may not close properly. Some vitamins and minerals other than folic acid are thought to play a role. It is also known that spina bifida can occur for some hereditary reasons; because in some families, spina bifida is more common. A drug used by the mother (valproic acid) to prevent seizures is known to cause spina bifida. It is thought that many other reasons that are unknown for today may be effective.
When does it appear?
Spina bifida occurs in the very early stages of pregnancy, in the third week of life in the womb. For this reason spina bifida is called a congenital disorder. It is different from spinal cord damage at a later stage of life, for example as a result of a traffic accident. Although a person with such a spinal cord has difficulties in walking, bladder and bowel control, hydrocephalus does not develop in them. In these types of injuries, the leg muscles are well developed, since there were no prior problems and the person could walk before the accident.
Who can have a child with spina bifida?
Any pair can have a child born with spina bifida. There are 10 million spina bifida in the world. In developed countries, one in every thousand children is born with spina bifida. In a study carried out by our association, approximately 37,000 births were recorded in İzmir city center in 2000 and the incidence of spina bifida was found as high as 1.5 per thousand . In a previous study conducted in Ankara, this ratio was found to be 4 per thousand, indicating that there are differences between regions. Turkey's level of socioeconomic development in the region to obtain these rates were better than others in less developed regions, suggesting the possibility that the higher this ratio.
What is the treatment?
If the babies with spina bifida are born with myelomeningocele, the sac in their back is closed with surgery in the first days. Those with hydrocephalus develop a drainage system called shunt, which drains excess fluid from the brain into the bloodstream. In recent years, a new surgical method called “third ventriculostomy yerine has been used instead of shunt. It is reported to be a more natural method and the complications caused by shunting are not seen in this.
Can he recover completely after treatment?
Usually no. Surgeries are often performed to prevent further problems in maintaining the current state. Surgeries or some treatment methods try to make these patients' lives as close to normal as possible. Although they cannot become completely healthy, they are able to live independently. However, this depends to a large extent on the elimination of barriers to social life as well as medical support.
Is it possible to prevent this disease?
For today it is not possible to completely eradicate. Studies in recent years have shown that this disease can be prevented to a great extent with folic acid vitamin taken in the pre-pregnancy period. Nowadays, in many developed countries, all expectant mothers are taking folic acid before they become pregnant. Because when the mother finds out that she has become pregnant, time has passed to prevent spina bifida.
To find out if the baby has spina bifida, it is important to check whether the baby is 16-18. A blood test (AFP) and a detailed ultrasound examination is required between If the baby spina bifida with these 75-80% is diagnosed. The family may decide to terminate the pregnancy during this period by talking to an experienced and knowledgeable doctor. However, there are also many families who choose to continue their pregnancy and take care of their babies as well as they can, although they know that a different life awaits them in the future. In this case, it is the duty of the physician to respect this and to inform the family in the best way and to allow the baby to be born under appropriate conditions and to perform medical interventions.
Situation in Turkey
the nutritional status of pregnant women in Turkey, there are studies showing that good. In one study, folic acid (a group B vitamin), which is now accepted to be deficient in spina bifida, was found to be deficient in 60% of pregnant women. In addition, serious deficiencies were detected in other important vitamins. These resources are available from our association.
The majority of spina bifida babies still are born in Turkey before it can be diagnosed before birth. The responsibility here is in the family if she has not applied to a physician or Maternal and Child Health Centers before birth and during pregnancy. However, unfortunately, many children who have a regular pregnancy under the supervision of a physician and whose baby is said to be normal will be born with spina bifida. In this case, 16-18. If the patient does not have the tests to be carried out in weeks, the responsibility should belong to the physician. However, lack of information in the society prevents families from seeking rights.
There are still families who do not think that babies with spina bifida will not survive after birth at home and uncontrolled births, and that unfortunately cause death or starvation. It is not possible to estimate the number as they are not recorded. Unexpectedly, some of the babies born with spina bifida in hospital end up in a similar way, sometimes unfortunately with the advice of a physician. But we should note that the number of these doctors is decreasing with each passing day and the number of physicians and midwives who give information to the family about spina bifida and guide them to get the necessary treatment is increasing. If these patients can be referred under appropriate conditions, the first operations can be performed in the Neurosurgery Clinics in the big cities.
One out of every ten people with disabilities such as the world is in general in Turkey. Spina bifidals are also included in this number. Unfortunately, in developed countries to be disabled in Turkey it is much more difficult. Education, employment opportunities, social life are extremely limited. There are special schools for some physically disabled people, but spina bifidal people want to go to schools where normal children go, not private schools. This is their most natural desire from the human rights declaration. However, the vast majority of schools do not respond to their needs, but do not eliminate the barriers.
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