Spina Bifida


Spinal cord fracture is a congenital injury to the spinal cord that often leads to physical disability. To reduce the risk of babies being born with spinal cord hernia, women who want to become pregnant take vitamin B folic acid. If you have spinal cord fractures you can live a good life, but it is important to get the right help and support right from the start.

The spinal cord rupture occurs during the third and fourth weeks of the fetal stage when the so-called neural tube is closed. The neural tube is a precursor to the central nervous system. The cause is not entirely clear, but the environment is important and spinal hernias are more common in some families.

Spinal cord hernia can often be detected in the ultrasound examination offered by all pregnant women during pregnancy weeks 18-20, but the hernia may not be visible at that time. Risk groups are often offered an ultrasound examination earlier.

Unlike other spinal hernias, the retinal hernia does not contain nerve tissue but only spinal cord fluid. Peritonitis can also contain blood vessels and fat.

Symptoms of spinal cord fracture

If you have spinal cord fractures, the nerves that exit from the spinal cord at the site of and below the hernia are completely or partially destroyed. This leads to muscle weakness and sometimes paralysis as well as various degrees of disability. The location of the hernia on the spine determines which muscles are affected and how great the risk of mental disability is. The higher up the spine the hernia sits, the more severe the symptoms the child gets.

In spinal cord fractures that sit high up on the spine, it is common for the child to be born with malformations in the hips, feet, and back. There is an increased risk of lumpy feet. Many of those with spinal cord fractures need rails and other orthopedic aids. Orthopedic surgeries may also be needed. The risk is also greater for the brain to be affected. At the lowest rupture, the brain does not usually be affected.

Impaired feel and problems with bladder and bowel

Anyone who has spinal cord hernias has an impaired feel in the muscular areas. When the ability to feel pain and touch is impaired, the risk of being injured increases.

The bladder usually works worse in those born with spinal cord hernia. It involves an increased risk of urinary tract infections and can lead to impaired renal function. Urinary leakage is common and often you cannot urinate yourself, but you need to empty the bladder with the help of a catheter. In addition, it is common for the intestine including the end muscle not to function properly. This can mean that you are constantly constipated and also have difficulty holding back the stools.

Hydrocephalus and brain damage

Almost all children born with spinal cord hernia have or develop hydrocephalus also called a water skull. Then too much fluid accumulates in the brain so that the pressure there increases.

Injuries to the brain that are related to spinal cord fractures can, for example, mean that you have difficulty orienting yourself, interpreting what is happening, taking your own initiative and keeping your attention.

Children with spinal cord fractures and hydrocephalus may have difficulties in school in terms of language and reading comprehension as well as math.

Visual impairment and latex allergy

If you have spinal cord fractures and hydrocephalus, vision problems are common. For example, it may be about discernment, refractive error or difficulty in judging distance.

Those born with spinal cord hernias develop hypersensitivity to a certain type of rubber, known as latex. This is especially true of those who have undergone several operations. Latex allergy can be prevented by avoiding contact with products containing latex, such as certain pacifiers or baby bottles. All surgeries that a patient with spinal cord hernia undergoes must be latex-free. This is true throughout life. 

When should I seek care?

Spinal cord hernias are usually detected already during the ultrasound examination during pregnancy or immediately after childbirth. But if this has not happened and you later suspect that your child has spinal cord hernia, you should contact the childcare center, BVC.

This is how spinal cord fractures are prevented

Research has shown that vitamin B folic acid reduces the risk of spinal hernia. If you are likely to become pregnant and are not sure about getting enough folic acid through the food you eat, the National Food Agency recommends a daily supplement of 400 micrograms folic acid tablets prior to pregnancy. The tablets are available for prescription and if you become pregnant you continue to take them until the twelfth week of pregnancy. 

If you eat a one-sided diet or have illnesses that lead to impaired absorption of nutrients from the food, you may need a higher dose of folic acid. It is good to determine any dose increase in consultation with your doctor or dietician.

If you have previously given birth to a baby with spinal cord hernia, you should be treated with a higher dose of folic acid before a new pregnancy, in consultation with your doctor. You should also be checked on specialist maternity care with extra ultrasound examinations.

Treatment of spinal hernia

When the spinal cord fracture is not covered by skin, in this area the protective barrier against infections that the skin creates is lacking. The risk is then great that bacteria, such as skin bacteria, can enter the spinal cord and brain fluid and cause infection. Therefore, an operation is performed during the child’s two to three first days of life when nerves are released from the hernia sac and the hernia is closed. If the hernia is completely covered with skin, there is no increased risk of infection and then surgery is not so urgent.

If the child has hydrocephalus, a so-called shunt is operated. It is a hose with a valve that directs the fluid from the brain cavity down into the stomach. There, the fluid is absorbed by the peritoneum.

Children born with spinal cord hernia are regularly checked for urinary tract, intestinal, nervous system, joints and skeletons and more so that doctors and other specialists can detect medical problems and minimize the number of injuries. What you are looking for is kidney damage due to altered bladder function and undetected infections. Follow-up is done based on the child’s needs and according to a national care program called MMCUP.

What happens in the body?

The spinal canal is the tube formed by the hollow spinal vertebrae of the spine. The spinal canal contains the spinal cord, which mediates nerve impulses between the brain and the rest of the body.

The central nervous system is formed from the neural tube, which during pregnancy week three to four should be connected to a tube. If the spinal canal is not closed properly during the fetal stage, undeveloped spinal cord, spinal cord membranes, and nerve fibers can end up outside the spine in a so-called hernia sac. The nerves are then unprotected and can easily be damaged, leading to impaired function. If the hernia is not covered by skin, the spinal cord can easily be damaged during childbirth. There is also a risk of spinal cord and brain becoming infected after childbirth.

The hernia may be anywhere along the spine from the neck down to the tail vertebrae, but most commonly it is located at the back end.

Living with spinal cord hernia

It is important to have an early assessment of the child’s abilities, and that the child, if necessary, receives stimulation and training already during preschool age. Before the child should start in a preschool class, a psychological assessment should be made to map the child’s strengths and weaknesses so that the teaching can be organized in the best possible way. A new assessment should be made before changing the stage of the school, for example from low to middle school. Most children with spinal cord fractures go to regular school but may need extra support, both with practical things and with learning.

Those who have spinal cord fractures usually need to have regular contact with health care throughout their lives. They usually need to go through various checks and may need to undergo surgery. Regular checks are especially important during childhood and adolescence.

Important with training

In order to achieve maximum independence, regular physical exercise is also important and to practice various activities in daily life, so-called ADL training.

In addition, regular assessment by a physiotherapist is important in order to detect any new incidents that may need to be investigated and treated. The vast majority have regular contact with a physiotherapist, occupational therapist and curator through child rehabilitation throughout their upbringing.

It varies how independently an adult with spinal cord hernia can live. Some manage to take care of themselves and the household entirely on their own, while others may need practical help from relatives, home care and personal assistants.

How to cope in working life when you have spinal cord fractures can vary from person to person. 

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