Spina Bifida: A Birth Defect What Every Parent Needs to Know

 

Spina Bifida is a birth defect called neural tube defects. Normally, the neural tube forms early in pregnancy and then is fully closed by the 28th day after conception. Babies with spina bifida, a portion of the tube don’t develop or close properly, causing a defect in the spinal cord and in the bones of the spine.

Each year approximately 8 million babies worldwide are born each with serious birth defects that may be physical, mental, functional or metabolic. There are between 61 and 69.9 birth defects per 1000 live births in India.

India has a high rate of birth defects because of high fertility rates, unplanned pregnancies, poor antenatal care, poor maternal nutrition, consanguineous marriages etc. In most cases, newborns with a serious congenital disorder who survive, have to live with severe disabilities for life.

Spina Bifida (spinal malformation) is one of the most common permanently disabling birth defects. It is a neurological condition and about one million cases are reported in India each year.

Its prevalence  is approximately 1-5 per 1000 live births and the risk of recurrence is 2-3%. More than 95% of cases are contributed by the first affected pregnancies. The distribution of neural tube defects shows considerable geographical, temporal and ethnic variation.

According to Dr Santosh Karmarkar, paediatric surgeon in Lilavati hospital  and chairman of the Spina Bifida Foundation- “While globally only 1-2 cases of spina bifida are detected for every 1,000 live births, in India this number is 4 to 8 times higher per 1,000 live births varying from state to state that often goes unnoticed due to lack of awareness.”

"Spina bifida is a neural tube defect that affects spinal growth, causing paralysis of lower limbs in some cases; happens in the first few weeks (28 days) of pregnancy, often before a woman knows she’s pregnant. Research indicates that mothers with low levels of the common vitamin B (folic acid) are at high risk of having a baby with spina bifida."

What is Spina Bifida,

Spina bifida (“cleft spine”) is a birth defect affecting the spinal column. Spina bifida progresses from a cleft, or splitlike opening, in the back part of the backbones (the spinal vertebrae). In more severe cases, it involves the spinal cord. Spina bifida is the most common of a group of birth defects known as neural tube defects, which affect the central nervous system (brain and spinal cord).

It can impair your toddler’s brain, spine, spinal cord, and meninges (tissues covering and protecting the brain and the spinal cord).

Spina bifida begins in the womb, when the tissues that fold to form the neural tube do not close or do not stay closed completely. It can happen anywhere along the spine’s length. This can lead to paralysis in the lower back, birth of a baby with a lump in the back, or weak muscles. Due to this, there is no control over urine-stool along with lack of strength in the legs. Many children with spina bifida will need a wheelchair or leg braces in order to move around. It impacts around 1in 2000 babies.

Spina bifida will range in terms of severity and treatment needed. In some instances, the baby may need to undergo an operation right after birth while in other instances, the problem may only cause minor problems.

Symptoms Of Spina Bifida In Babies,

According to the Stanford Children’s Hospital, the following are the symptoms of spina bifida in babies .

-Increased fluid and pressure in the head (Hydrocephalus)

-Heart problems

-Bone problems

-Poor cognitive skills for their age

-Symptoms of spina bifida occur differently in different babies. The symptoms may also be similar to other health conditions. Therefore, consult a doctor for a diagnosis.

-Abnormal appearance of an area on the back, such as a small patch of hair, dimple, birthmarks, or a pouch-like bulge or a fluid-filled sac

-Loss of sensation below the area under the fluid-filled sac

-Inability to move legs or feet

-Constipation or urinary incontinence

-Children also might have trouble breathing, swallowing, or moving their upper arms. They also might be overweight. The symptoms depend a lot on where the problem is in the spine and which spinal nerves are involved.

Causes of Spina Bifida,

No one knows for sure what causes spina bifida. Scientists think it may be a combination of the environment and family history, or a lack of folic acid (a type of vitamin B) in the mother's body.

Uma Kalekar, director of Meyer Organics, said a major cause for the occurrence of spina bifida is poor nutrition, specifically low levels of folic acid in pregnant women, which contributes to this birth defect.

This common birth defect has no exact causes. According to some experts, the environment and genes can be considered as a part of the cause. It includes –

-Uncontrolled diabetes in the mother

-Folic acid deficiency during pregnancy

-Exposure to certain chemicals

-Proper intake of folic acid during the time of conception and pregnancy can decrease the risk of spina bifida.

-Almost 90% of the cases occur with no previous history of spina bifida. However, , when a woman gives birth to a child with spina bifida then there are more chances that other child will be born with this disease

-There are more chances of spina bifida in those women who have diabetes or are obese.

-Excessive use of alcohol

-Exposure to high temperatures

-High fever in early pregnancy

Types,

There are three main types of spina bifida:

Spina bifida occulta (SBO): This is the most common and mildest form of the defect. Many people don't even know they have it. ("Occulta" means "hidden" in Latin.) Here, the spinal cord and nerves are usually fine, but there might be a small gap in the spine. People often find out they have SBO when they get an X-ray for some other reason. This type of spina bifida doesn't typically cause any type of disability.

Meningocele: This rare type of spina bifida happens when a sac of spinal fluid (but not the spinal cord) pushes through an opening in the baby's back. Some people have few or no symptoms, while others have problems with their bladder and bowels.

Myelomeningocele: This is the most severe type of spina bifida. Here, the baby's spinal canal is open in one or several places in the lower or middle back, and a sac of fluid pokes out. This sac also holds part of the spinal cord and the nerves, and those parts get damaged.

Other possible factors of Spina Bifida,

- Inadequate intake of Folic acid and low socioeconomic status have been seen as the most common risk factors for Spina Bifida

- Maternal Fever during the first trimester increases the risk of Spina Bifida to two to three folds.

- 1st and 2nd children are most commonly affected.

-Incidence at birth and in children with spina bifida is more in males.

Preventions, 

Folic acid, taken in supplement form starting at least one month before conception and continuing through the first trimester of pregnancy, greatly reduces the risk of spina bifida and other neural tube defects.

Having enough folic acid in your system by the early weeks of pregnancy is critical to prevent spina bifida. Because many women don't discover that they're pregnant until this time, experts recommend that all women of childbearing age take a daily supplement of 400 micrograms (mcg) of folic acid.

Several foods are fortified with 400 mcg of folic acid per serving, including:

- Enriched bread

- Pasta

- Rice

- Some breakfast cereals

- Folic acid may be listed on food packages as folate, which is the natural form of folic acid found in foods.

Treatment of Spina Bifida,

There is no cure for spina bifida. In general, most newborns with myelo meningocele die a few hours after birth. But the babies who survive are treated by surgery. The patient complains of water filling problem (Hydrocephalus) which is treated by shunt method. In most cases, despite all types of treatment and surgery, there is a possibility of mental-physical disability in these children.

Some of its treatment options are –

Orthopedic Surgery: Feet and leg operations can be performed for improving the mobility of the children.

Bladder Surgery: This surgery is performed for tightening the muscles and also for increasing the bladder size.

Surgery: Surgery is done for decreasing the risk of infection and also for closing the lesion.

Diet and Enemas: Faecal incontinence is managed by the means of diet and enemas.

Aids: Wheelchairs or walking aids are used.

General Measures: Regular monitoring of bladder, spine and kidney functions is required.

Continence Pads and Self-Catheterization: Urinary incontinence is very essential to manage. Urinary or faecal bags are sometimes required.

High rate of neural tube defects/Spina Bifida  in India,

In India, unplanned pregnancies, unawareness regarding the benefits of periconceptional folate supplementation, and the absence of such prenatal diagnostic tests mean that parents only become aware of their malformed infant after birth.

Globally, one to two babies per 1000 have spina bifida. An Indian review of studies found that, among neural tube defects, spina bifida affects one in 523 babies.

"Almost 50% of pregnancies are unplanned. Around 72% of spina bifida and neural tube defects (NTDs) can be prevented with vitamin and folic acid,” said gynaecologist Dr Kiran Coelho from Lilavati Hospital, Bandra.

In the absence of primary care and prevailing associated social stigma, many patients/babies of neural tube defects (NTDs) from remote areas die without getting any treatment. While the Rashtriya Bal Swasthya Karyakram, a scheme under the National Rural Health Mission, has done significant work in recent years in identifying and ensuring free treatment of spina bifida in rural areas, Dr. Karmarkar said it is being wound up.

Doctors say- In India very little work has been done in this area, there is a dire need of better allocation of resources as the incidence of common birth defects in India is staggeringly high and the country has a long way to go in this regard.

Indian Spina-Bifida Association

Website: www.indiaspinabifidaassociation.org

ISBA is a non-profit organization started by parents in order to connect with other parents of children with spina bifida.

Email: vinita@indiaspinabifidaassociation.org

Spina Bifida Foundation

Website: www.spinabifidafoundation.org

The SBF, is a not-for-profit organization formed by medical professionals and parents of spina bifida children. They have been involved in the care and upbringing of spina bifida patients in India.

Email: sbfsecretary@gmail.com

Contact: +91 98203 06107, +91 99308 96973