Spina Bifida - Spina Bifida Hydrocephalus Ireland

What is Spina Bifida? Types of Spina Bifida effects of spina bifida What is Spina Bifida Occulta? Spina Bifida & Folic Acid Spina Bifida & Hydrocephalus Spina Bifida & Latex Allergies Continence Learning & Education Healthy Body/Healthy Mind Support & Resources Glossary

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The information on this website does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBHI advises readers to consult a qualified medical or other professional on an individual basis.

WHAT IS SPINA BIFIDA?

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Spina Bifida literally means ‘split spine’

Spina Bifida is a relatively common condition, which affects about one in every 1000 children born per year in Ireland. Ireland has one of the highest incidences of Spina Bifida births in the world. Spina Bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord. Translated, it literally means 'split spine'.

The Central Nervous System (CNS)

SBHI The nervous system is essentially a biological information highway, and is responsible for controlling all the biological processes and movement in the body, At the centre of this system is the Central Nervous System (CNS).

The CNS consists of the brain and spinal cord. It is responsible for receiving and interpreting messages and also sends out messages, either consciously or unconsciously.

The Spine

The spine is made up of separate bones called vertebrae, which normally cover and protect the spinal cord. With Spina Bifida, some of these vertebrae are not completely formed. Instead, they are split and the spinal cord and its coverings usually protrude through a sac-like bulge on the back, covered with a thin membrane.

The Neural Tube

In the developing vertebrate, the neural tube is the embryo's precursor to the central nervous system.

The central nervous system and spine develops between the 14th and 23rd day after conception. Spina bifida occurs when the neural tube fails to close correctly. The vertebrae also fail to close in complete rings around the affected portion of the spinal cord. This leaves a gap posteriorly (at the back), involving one or more vertebrae. Spina Bifida may occur in one or more of the vertebrae but it is most common around waist-level.

Types of Spina Bifida

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Spina Bifida Occulta

occulta

This is known by some people as 'hidden' Spina Bifida and is very common. The split in the bone of the spine is small and the spinal cord and main nerves cannot bulge out and so little or no damage is done. The only thing to see on the back may be a dimple, tuft of hair, or a red mark. Someone with Spina Bifida Occulta may not have any problems at all and probably wouldn't know they had this condition unless an x-ray of the back was taken. Antenatal tests usually do not detect this type of Spina Bifida, before birth.

Meningocele

(Pronounced men-in-jo-seal)
In this type of Spina Bifida, the split in the bones is not big enough for the spinal cord to come through, but a 'balloon' of skin filled with fluid and blood vessels bulges out. This fluid which comes from around the spinal column is called cerebro-spinal fluid (CSF). Usually the nerve supply is not affected. The degree of disability is usually less severe than Myelomeningocele, but can only be determined as the child develops.

Myelomeningocele

(Pronounced my-lo-men-in-jo-seal)
This is the most common form of Spina Bifida. The areas effected are dependent on the location of the split. The split contains the spinal cord and nerves are held in the sack which will also be filled with fluid. The spinal cord and nerves become exposed and the degree of damage will determine the extent of disability. A Myelomeningocele is most frequently found in the lumbar area, but can occur anywhere along the spine.

Encephalocele

(Pronounced en-cef-a-lo-seal)
In the minority of cases of NTD's, the split is high up and involves the back of the head (skull). There is a balloon-like swelling but this does not contain important nerves of the spinal column. Some Encephaloceles are small, covered with skin and the children usually grow up without major implications. Sometimes, however, it is large and may contain some of the brain and this can severely affect the baby's eyesight and can cause learning disabilities. Sometimes, however, they can contain large volumes of brain tissue, so that the reaming brain is small, poorly developed and severely Hydrocephalic.

Anencephaly

(pronounced an-en-cef-a-lee)
Anencephaly results in only minimal development of the brain. Often, the brain lacks part or all of the cerebrum (the area of the brain that is responsible for thinking, vision, hearing, touch, and movement). Due to the extent of under-development of the brain babies affected by this condition are unlikely to survive outside the uterus, may be stillborn or die shortly after birth. Treatment is supportive.

Support

At Spina Bifida Hydrocephalus Ireland (SBHI) we offer a number of supports to individuals, families, carers and professionals through our Family Support Services.

The aim of the service is to work with our members, their families and carers, by providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own home, in hospital, in school or in the work place. The nature and delivery of our service is a direct response to the needs of our service users, their families and carers. This information, support and guidance is available from the time of diagnosis, which can occur during pregnancy or at the time of birth, through to adulthood.

The role of the FSW is very diverse and is guided by the needs of our members, their families and carers. Our aim is to work with our members, their families and carers by providing guidance, advocacy, emotional and practical support.

We also provide healthcare professionals, education professionals and those working within the disability sector with information, resources and guidance, ensuring that our members receive the best possible provisions from their multidisciplinary team.

WHAT ARE THE EFFECTS OF SPINA BIFIDA?

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An overview of the effects of Spina Biffida

The effects of Spina Bifida vary enormously, depending on the type, the location of the cyst and the severity of the condition. These include Hydrocephalus, varying degrees of paralysis, pressure sores, loss of sensation of the lower limbs, malformations, latex allergies, social and sexual issues and bowel and bladder incontinence.

Latex Allergy

A small minority of people with Spina Bifida are allergic to latex. This is an allergy to products made from natural rubber latex. Products made from natural rubber latex usually contain a number of chemicals and some people are allergic to the chemicals rather than the latex itself.

Sex and Reproduction

The male and female reproductive organs develop normally in the person with Spina Bifida. Nerve damage may, in some cases, affect the function of the reproductive organs. The desire to have sexual intercourse or a sexual relationship can be as strong in someone with Spina Bifida as anyone else. Many people with Spina Bifida and Hydrocephalus live happily with a partner enjoying a satisfying sexual relationship, and have families of their own. It is advisable to take the higher dose (5mg) of folic acid prior to conception. Urinary and bowel incontinence can be an issue, but they do not make sexual relations impossible.

Pressure Sores

A pressure sore is a sore on an area of skin where there is continuous heavy pressure, leading to a reduced flow of blood to the area causing tissue to erode and die. People with Spina Bifida, especially wheelchair users are prone to developing pressure sores because of insensitive skin or paralysis.

Paralysis and loss of sensation

In the case of myelomeningocele the spinal cord protrudes from the spine throughout pregnancy and is closed by surgery shortly after birth. As a result the spinal cord is almost invariably damaged and defective, the nerves being disorganised and broken. As a result messages from the brain (controlling and initiating movement) and those from the body to the brain (giving the sensations of touch, pain and position) are impaired. However, paralysis, muscle weakness and loss of sensation occur only at the level of the lesion and downward. Due to lack of skin sensation and decreased mobility, skin tissue breakdown may occur resulting in pressure sores. In most cases the head, upper trunk and arms are not affected. The level of impairment varies considerably depending on the amount of damage and the location of the lesion.

Lack of bladder and bowel control (incontinence)

The nerves that control the bladder and bowel are located in the lowest region of the spinal cord. Consequently incontinence is a major problem particularly in the case of myelomeningocele. Lack of bladder control presents two immediate dangers - infection and back pressure on the kidneys which, without proper management, can lead to renal problems.

Hydrocephalus

Hydrocephalus literally means 'water on the brain' and is a potentially dangerous condition involving the excessive accumulation of spinal fluid within the brain caused either by over production of the fluid or more usually by an obstruction to its normal circulation. While it is a complication of Spina Bifida occurring in approximately 90 % of cases, Hydrocephalus is by no means exclusive to Spina Bifida.

What is Spina Bifida Occulta?

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“Occulta” Means Hidden

SBHI Spina Bifida Occulta is not easily detected because skin covers the area, such as the spinal cord, spinal bone or nerve roots, which may be affected. Spina Bifida Occulta can affect any level of the spine, but is usually found in the lower part of the back. This condition is a result of a spinal underdevelopment and is associated with disrupted development of the spinal nerve roots and spinal cord. The only thing to see on the back may be a dimple, tuft of hair, or a red mark.

The prevalence of Occulta is not known, but it is probably the most common type of Spina Bifida. In the mid 1980’s a study carried out in Great Britain suggested that 22% or 23% of people have Spina Bifida Occulta.

Spina Bifida Occulta is usually discovered accidentally when the person has an x-ray or MRI for some other reason. Most people will not even be aware that they have Spina Bifida Occulta unless it shows up on an X-ray which they have for some unrelated reason. It usually shows itself as just a small part of one vertebra low in the back which is missing.

See the diagrams below that show cross sections of one vertebra:

SBHI

Compilations and Symptoms

Spina Bifida Occulta is rarely linked with complications or symptoms. Although there may be a slightly increased chance of a slipped disc; very few people with Spina Bifida Occulta will ever have any problems because of it. If a person has no symptoms from Spina Bifida Occulta as a child, then it is unlikely that they will have any as an adult.

Like most conditions, there are different severities of Spina Bifida Occulta: The most minor form will present as the plates of bone that form the spinal arch fail to fuse completely. This variation generally only affects one vertebra, particularly the vertebra lying lowest in the small of the back. Because there are no associated irregularities of the spinal cord or nerve roots, there are no leg, bladder or bowel problems.

However, for some people (about 2% of those who have Spina Bifida Occulta) there can be other problems. These problems arise because there are other things involved around the area where the vertebra has not formed properly. For this small percentage of people the problem with the spine can also be more extensive than just a small piece of missing bone.

Spina Bifida Occulta Vs Occulta Spinal Dysraphism

When more than one vertebra is involved and these vertebrae have not developed fully Spina Bifida Occulta can be referred to as Occult Spinal Dysraphism (OSD). This may cause the person's back to be slightly short and often stiff. The natural curves of the back may be exaggerated and there may be an abnormal curvature of the spine or a bony protrusion in the midline of the back. There may be a bony peg at one level of the spinal canal, or a fibrous band running across it and dividing it into two. The spinal cord may become excessively wide because of abnormal fat or fibrous tissue lying inside the spinal canal. Leg, bladder, or bowel function may also be affected.

Some of the other things which can occur around this site and affect a person’s functioning are:

Distortion of the spinal cord and the nerve roots coming from the spine by fibrous bands or adhesions
Fatty tumours in the spine, under the skin or in surrounding tissues
Cysts in the skin or just under it
Cysts filled with cerebrospinal fluid in the spine (syrinxes)
Divisions in the spinal cord
Spinal cord tethered or held down at the site (unable to move freely in the spinal canal)

In addition to these structures which are usually hidden from view, there are a number of signs which may appear on the skin (cutaneous signatures) and give a clue to the underlying problems with the central nervous system.

These signs can appear on their own but quite often they appear in combination. Some common ones are:

An abnormal hair growth over the thoracic or lumbar spine
A dermal sinus or small tract which leads from the skin surface down through to the spinal cord. Blind sinuses or pits which do not lead into the spine are common in newborns especially in the crease of the bottom and do not indicate underlying problems.
A fatty mass (lipoma) just under the skin
A rudimentary tail
A capillary haemangioma (stork bite) over the lower spine. Haemangioma over the back of the head are more common and do not indicate underlying problems.

A word of warning: This sounds as if there is clear difference between Spina Bifida Occulta and Occult Spinal Dysraphism (OSD). In practice, this is not always the case. The best test available at the moment is the MRI (Magnetic Resonance Imaging), but sometimes it is not easy to determine whether or not there is any neural (nerve) involvement.

How can Occulta Spinal Dysraphism affect functioning?

Because the spine and the nerve roots at the site of the lesion are affected, in theory any problem from the waist down can be due to OSD. Depending on the amount of neural involvement, symptoms can be absent, minimal, or severe. Symptoms can include:

Weakness or sensory loss in the legs, feet
Leg length difference
Foot deformity
Problems with gait (walking)
Bowel or bladder infection or incontinence
Constipation
Scoliosis (sideways curvature of the spine)
Back pain

Continence problems may present as:

Bedwetting which persists well into childhood
Lack of awareness of need to pass urine until it is urgent
Inability to hold on, even for a few minutes
Dribbling of urine between visits to the toilet
Recurrent urinary tract infections
Constipation

For parents of young children with these problems, it is important for you to:

Not lose patience with your child. Discipline or behaviour management rarely solves this problem.
The self-esteem of your child is of paramount importance.
Try to establish a toileting routine eg toileting first thing in the morning, at morning tea, lunchtime, after school, after dinner and just before bed. Ensure the last drink is several hours before bedtime if possible. Adequate fluids throughout the day are essential though.
Talk to your child’s school. Let them know about your child’s toileting needs, so that the school can accommodate them.
Ask your GP for a referral to a urologist (a specialist in urinary problems).
Talk to a Continence Adviser regarding continence aids.

For constipation, seek advice on management from a Continence Adviser (Contact your Family Support Worker who can put you in touch with the SBHI Continence Advisor). This problem can be treated more effectively if treated early. A well-balanced high fibre diet is important.
Lower limb problems

Most children and adults with OSD have no orthopaedic (muscle and bone) problems. When problems do manifest though, a GP should be consulted who may refer to an orthopaedic surgeon.

Back pain

Back pain may be a significant problem for people with OSD. It is sometimes present even in young children. It may be difficult or impossible to say that OSD is actually causing the pain.

Back pain is very common in our society. Many people suffer back pain for a great variety of reasons and those reasons may be present with or without OSD. For a person experiencing back pain it is appropriate to look at what other factors may be influencing the pain. The fact that a person has OSD cannot be changed, but many other factors can.

It is important to be aware of good back care eg correct lifting methods, good posture, appropriate exercise etc. A physiotherapist can give advice in these areas.

Tethering of the spinal cord

The normal spinal cord moves freely in the spinal canal. However sometimes in OSD, the cord becomes tethered or stuck down. This can cause stretching of the cord and affect the blood flow to the area, especially during times of rapid growth. Some of the symptoms of a tethered spinal cord are:

Increased weakness or loss of muscle function
Increased muscle tone
Deterioration in gait
Worsening of bladder function
Progressing scoliosis
Back pain

All of these symptoms can have other causes and should be investigated. The spinal cord can be tethered with no symptoms. If it is warranted, an operation can be performed by a neurosurgeon to ‘detether’ the spinal cord.

This procedure will usually not restore lost functioning, but in most cases it is able to halt the worsening of symptoms.

Corrective Surgery

OSD develops during the first month of pregnancy and cannot be corrected. However, surgery can assist with some aspects. Apart from spinal cord de-tethering, surgical procedures

Can remove fat or fibrous tissues which are affecting the functioning of the spinal cord
Can drain syrinxes or cysts in the spinal canal to reduce pressure on the spinal cord
Can be performed on the legs or feet to improve their functioning

Support

At Spina Bifida Hydrocephalus Ireland (SBHI) offers a number of supports to individuals, families, carers and professionals through our Family Support Services.

The aim of the service is to work with our members, their families and carers, by providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own home, in hospital, in school or in the work place. The nature and delivery of our service is a direct response to the needs of our service users, their families and carers. This information, support and guidance is available from the time of diagnosis, which can occur during pregnancy or at the time of birth, through to adulthood.

The role of the FSW is very diverse and is guided by the needs of our members, their families and carers. Our aim is to work with our members, their families and carers by providing guidance, advocacy, emotional and practical support.

We also provide healthcare professionals, education professionals and those working within the disability sector with information, resources and guidance, ensuring that our members receive the best possible provisions from their multidisciplinary team.

SPINA BIFIDA & FOLIC ACID

Folic Acid & the prevention of NTD’s

Spina Bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord. The exact cause of Spina Bifida is unknown; however the causes of Spina Bifida are thought to be a combination of environmental and genetic factors and a lack of folate in the diet - or the inability to naturally absorb folate. Research to determine the causes of NTDs is still ongoing. What is evident though is that taking Folic Acid cannot prevent all occurrences of Spina Bifida but it can help to reduce the risk by up to 75%

Not Planning Yet?

In Ireland 50% of all pregnancies are unplanned each year. Spina Bifida Hydrocephalus Ireland would recommend that any women of child bearing age take Folic Acid as part of their regular diet. Taking 400 micrograms / 0.4 mg of folic acid can reduce the risk of Neural Tube Defects (NTDs) such as Spina Bifida.

It’s a Small Effort

Folic acid is a B vitamin that can be found in some foods. It can be difficult to get your recommended daily allowance (RDA) of folic acid from food alone. The most practical way to make sure you are getting enough folic acid in your diet is to take a folic acid supplement. If you take a multivitamin, check that it has the RDA of folic acid – 400 micrograms.

What is the risk of having a baby with Spina Bifida?

Women who may become pregnant but who have not been identified as being in a high-risk group should also take folic acid. Folic acid should be taken for at least one month before conception and then until the end of the 12th week of pregnancy.

If a couple have already had a child with Spina Bifida (or have had a pregnancy affected by Spina Bifida) the risk of it happening in another pregnancy is about 1 in 35. For the general population the risk varies from 1 in 300 to 1 in 1,000.

Can Spina Bifida be prevented?

Evidence shows that taking Folic Acid cannot prevent all occurrences of Spina Bifida but it can help to reduce the risk by up to 75%.

Research has shown that women who have had a pregnancy affected by a neural tube defect can greatly reduce their chances of it happening again, simply by taking a daily vitamin supplement (tablet) of folic acid, before pregnancy and for the first 12 weeks of pregnancy.

What does this mean in practice?

Women at higher risk of having a baby with an NTD should take a daily 5mg tablet of folic acid for at least one month before conception and then throughout the first 12 weeks of pregnancy. These 5mg tablets have to be obtained on prescription from a GP.

Women considered to be at higher risk of having a neural tube defect pregnancy include those who:

have had a previously affected pregnancy
have an NTD themselves (or their partner has an NTD)
have a family history of NTD or whose partner has a family history of NTD.
have diabetes mellitus
are very overweight
have the “significant” form of Spina Bifida Occulta (see ‘What is Spina Bifida Occulta?’)

Women in families where there has been Spina Bifida or another NTD in other relatives may wish to receive genetic counselling. In these cases, they should ask their doctor to refer them to a genetic counsellor.

A healthy diet can help

Women who are planning to become pregnant should also make sure that their diet includes foods which contain folate (this is folic acid in its natural form found in food).

Foods in which folate naturally occurs include baked beans, chick peas, green leafy vegetables, lentils, orange juice, oranges, peas, rice, soya beans, split peas and sprouts. Vegetables should be lightly cooked or steamed as over-boiling destroys their vitamin content.

Although it contains folate, liver should not be eaten: liver contains high levels of vitamin A, which could harm the unborn baby. Additional vitamin A supplements (tablets) should not be taken.

Some substances may affect the absorption of folic acid so women taking any medication should check this out with their doctor. Those with epilepsy and on anti-convulsant medication should consult their neurologist before taking folic acid, as folic acid and some anti-convulsants can be antagonists (i.e. work against each other).

Further information

More information about diet and vitamin supplementation can be obtained by contacting SBHI, GPs, health visitors, hospital doctors, dieticians and pharmacists.

If you have any questions about this information please contact the SBHI helpline or e-mail info@sbhi.ie.

SPINA BIFIDA & HYDROCEPHALUS

Hydrocephalus literally means 'water on the brain' and is a condition involving the excessive accumulation of Cerebral Spinal Fluid (CSF) within the brain caused either by over production of the fluid or more usually by an obstruction to its normal circulation. While it is a complication of Spina Bifida occurring in approximately 90 % of cases, hydrocephalus is by no means exclusive to spina bifida. For more information, visit our Hydrocephalus page.

SPINA BIFIDA & LATEX ALLERGIES

Latex is the sap from the Hevea brasiliensis tree. The first reports of latex allergies in people with Spina Bifida were in the late 1980s. Today, experts think latex allergies could be common for up to 73 percent of those with Spina Bifida.

No one knows why people are allergic to latex. Some experts think it’s because people have too much contact with it. People with Spina Bifida that have or have had shunts, other allergies and a lot of surgeries may be at more risk than others. Latex allergies are not specific to Spina Bifida and can be a problem for anyone else who has a lot of contact with it.

Latex allergy is not fully understood. Experts are still learning what proteins cause it.

Latex reaction

Check labels to ensure they do not have natural latex rubber in them.

Signs of an allergic reaction include:

watery and itchy eyes;
sneezing and coughing;
rash or hives;
swelling of the windpipe;
wheezing;
a hard time breathing;
life-threatening collapse of blood circulation

The only way to not have a latex reaction is to avoid things with latex or latex-contaminated powder. Contact occurs when latex touches the skin, mouth, eyes, genital areas or bladder. Severe reactions can take place if latex enters the bloodstream. Powder from latex balloons or gloves can get into the air. This is a problem when breathed or touched by a person who is allergic. Food touched by people wearing latex gloves might have this powder on it. (People allergic to latex may also be allergic to some fruits and vegetables.)

Steps to take

Avoid latex products right from birth. Things made of silicone, plastic, nitrile or vinyl can be used instead.

Those who had a reaction to latex should:

wear a medic-alert bracelet or necklace;
carry auto-injectable epinephrine;
carry sterile non-latex gloves and other non-latex medical items for emergencies.

Discuss latex allergy and avoidance with health care providers, schools, pre-schools, visitors and anyone else who is involved with the person who is allergic.

Talk to health care providers before hospitalisation or surgery to prevent accidents and for latex-safe care.

Products containing Latex

The following items may be risky for people with a latex allergy:

Health care items with latex: gloves, catheters, tourniquets, elastic/ace bandages, IV tubing injection ports, vial stoppers, adhesive tape, dental dams and Band-aids.
Other items with latex: balloons, pacifiers, rubber bands, stretchy clothes, beach toys, Koosh balls, bottle nipples, condoms, diaphragms, diapers and art supplies.

Common household and hospital products containing latex:

Household gloves
Hospital gloves
Condoms
Condom incontinence aids
Wheelchair tyres
Adhesive tapes (sticky plasters)
Some urinary catheters
Some enema tubing
Protective sheets
Colostomy/urostomy products
Balloons and rubber balls
Art supplies
Dental dams
Baby bottle nipples and pacifiers
Elastic on clothes
Beach toys
Chewing gum

There are alternative, non-latex products for all of these items. Usually, these alternatives are made of plastic, vinyl or silicone.

Foods with a cross-reactivity to latex

Research has shown that proteins found in certain foods show similar immune system reactivity to the proteins found in latex. So, if your mouth itches when you eat any of the foods listed below, you could be allergic to latex as well. Foods which have been identified as having cross reactivity include:

Bananas
Potatoes
Avocados
Tomatoes
Kiwi Fruit
Mangoes
Chestnuts

There is a list available from the Spina Bifida Association (USA) This list provides a guide to some of the most common objects containing latex and offers some alternatives. It is not meant to be a comprehensive listing. Click here for to view the list

Is there a treatment?

Unfortunately, as with most allergies, the only effective treatment is avoidance. Substitute products made with other materials (for example vinyl or nitrile gloves can be used instead of latex gloves) or cover the items with a cloth to avoid direct contact. Consult an allergist, wear a medic alert bracelet and tell all your care providers about your allergy.

SUPPORT & RESOURCES

Family Support Service

The aim of the Family Support Service is to work with our members, their families and carers, by providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own home, in hospital, in school or in the work place. The nature and delivery of our service is a direct response to the needs of our members, their families and carers.

We provide information, support and guidance from the time of diagnosis, which can occur during pregnancy or at the time of birth, through to adulthood. We also provide healthcare professionals, education professionals and those working within the disability sector with information, resources and guidance, ensuring that our members receive the best possible provisions from their multidisciplinary team.

The role of the FSW is very diverse and is guided by the needs of our members, their families and carers. Our aim is to work with our members, their families and carers by providing guidance, advocacy, emotional and practical support. For further information visit the Family Support page or email the Family Support Team at familysupport@sbhi.ie.

Youth and Respite Service

The Youth and Respite Service provides services nationally to people with Spina Bifida and/or Hydrocephalus, their families and careers.

Its aim is to provide and develop respite and youth services that are conducive to the changing needs of our members.

We encourage our members to enjoy a healthy, social, active and fulfilled life, to avail of all education and employment opportunities and to promote the development of a progressive society that is inclusive, aware and accessible to all. For further information visit the Youth and Respite page or email the Youth and Respite Team at SHINE@sbhi.ie.

Health Service Executive

Disability Services

The HSE provides a range of services for people with intellectual, physical and sensory disabilities or autism. These services include basic health services as well as assessment, rehabilitation, income maintenance, community care and residential care.
Some services are provided directly by the HSE. Many of the community, residential and rehabilitative training services are provided by voluntary organisations with grant aid from the HSE.

For further information visit http://www.hse.ie/eng/services/Find_a_Service/Disability_Services/ or phone the HSE information line on 1850 24 1850

Disability Assessment of Need

On June 1 2007, Part 2 of the Disability Act 2005 became law for children under 5 years of age. Under Part 2 of this Act, children with disabilities have a right to:

an independent assessment of their health and educational needs arising from their disability
an assessment report
a statement of the services they will receive
make a complaint if they are not happy with any part of the process.

Who can apply for an assessment?

Any parent who feels that their child aged under 5 may have a disability can apply for an assessment. An application can also be made by a guardian.

For further information visit http://www.hse.ie/eng/services/Find_a_Service/Disability_Services/Disability_Assessment/ or phone the HSE information line on 1850 24 1850 or Apply in writing on a standard form which is available from the Assessment Officer in your Local Health Office.

Enable Ireland

Enable Ireland provides free services to over 3,700 children and adults with disabilities and their families from 15 locations and in local communities countrywide. Covering childhood to adulthood.

Service provisions in Enable Ireland vary from county to county but is usually serviced by a team which includes: physiotherapy, occupational therapy, speech and language therapy, social work, clinical psychology, pediatrician, early education and child care. More information on services in specific areas by visiting www.enableireland.ie

Enable Ireland adopts an interdisciplinary team approach to working with children, adolescents and adults with a physical disability. Individual Family Service Plans, where both team and family work in partnership to set goals and make decisions is an integral part of the service provision. The team currently consists of Occupation Therapist, Physiotherapist, Speech and Language Therapist, Social Worker and Administration.

Referrals to these services can be made by an SBHI Family Support Worker. For further information visit the Family Support page.

Publications

Glossary

Alpha-Fetoprotein (AFP) - High levels of this protein in the mother's blood or amniotic sac often associated with neural tube defect.

Ambulatory - Capable of walking.

Amniocentesis - A process by which the amniotic (or fetal) sac is punctured by a needle and fluid removed. The amniotic fluid removed can be studied for detection of neural tube defects and chromosomal abnormalities.

Anomaly - An organ existing in abnormal form, structure or location.

Catheter - A tube used to remove fluid from a cavity. A urinary catheter is passed through the urethra into the bladder in order to withdraw urine.

Chiari Malformation -The Chiari (II) is a malformation of the hindbrain, or brainstem associated with myelomeningocele and can cause hydrocephalus and other symptoms. The cerebellum may be elongated and drop down along the lower brainstem, through the case of the skull and into the cervical canal: the fourth ventricle may be elongated and enter the cervical canal. Although most people with myelomeningocele have Chiari Malformation, it is estimated that only 20-30 percent becomes symptomatic.

Congenital - Existing from birth.

Folic Acid - A "B" vitamin which is necessary to form essential body proteins and genetic materials. It promotes the synthesis of the oxygen-carrying blood protein hemoglobin.

Hydrocephalus - The increased accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain.

Incontinence - The inability to control urine or bowel movements.

Meningocele - A protrusion of the meninges out of an opening in the vertebral column.

Myelomeningocele - An "open spine" is a protrusion of the meninges, spinal cord and nerves out of an opening in the vertebral column. Skin, or a thin membrane may cover this spinal cord defect.

Neural Tube Defect - A birth defect somewhere in the neural tube, which consists of the brain and spinal cord.

Neurogenic bladder - Loss of nerve supply to the bladder resulting in an inability to voluntarily control the bladder.

Shunt - A system to control hydrocephalus. It consists of a one-way valve and a small plastic tube, one end of which is placed on one of the ventricles where cerebrospinal fluid is formed. The plastic tube is then placed under the skin behind the ear, where it is passed between the skin and underlying bone and muscle and into the abdominal cavity. The cerebrospinal fluid, which is passed into the abdominal cavity, is then reabsorbed into the bloodstream.

Spina Bifida - Failure of the spine to close. Lay-term for myelomeningocele.

Spina Bifida Cystica - A term covering both miningocele and myelomeningocele where the meninges protrude through the bifida (split) spinal column forming a sac or cyst filled with cerebrospinal fluid.

Spina Bifida Occulta - Failure of one or more vertebrae to close with the skin intact and no sac visible on the back. A child with Spina Bifida Occulta usually has no problems, and the defect may go undetected until a routine x-ray is taken.

Spinal cord - A column of nervous tissue, which is located within the vertebral column and directly connected to the brain. All nerves to the trunk and extremities are located within the spinal cord. The brain controls muscles of the body through nerves in the spinal cord.

Tethering - Binding of spinal cord to surrounding tissue.

Ultrasound - The use of high frequency sound wave echos to outline the shape of various tissues and organs in the body. Ultrasound is frequently used in prenatal care to establish the baby's due date, whether there is more than one baby, or detect some birth defects such as Spina Bifida and Hydrocephalus.

Ventricle shunt - A tube placed within the ventricles and used to prevent brain damage by draining excess fluid from the ventricles to another part of the body.

Vertebrae - The bony segment of the spinal column. 33 vertebrae make up the vertebral column or backbone.

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WHAT IS SPINA BIFIDA?

Spina Bifida literally means ‘split spine’

The Central Nervous System (CNS)

The Spine

The Neural Tube

Types of Spina Bifida

Spina Bifida Occulta

Meningocele

Myelomeningocele

Encephalocele

Anencephaly

Support

WHAT ARE THE EFFECTS OF SPINA BIFIDA?

An overview of the effects of Spina Biffida

What is Spina Bifida Occulta?

“Occulta” Means Hidden

Compilations and Symptoms

Spina Bifida Occulta Vs Occulta Spinal Dysraphism

How can Occulta Spinal Dysraphism affect functioning?

Corrective Surgery

Support

SPINA BIFIDA & FOLIC ACID

Folic Acid & the prevention of NTD’s

SPINA BIFIDA & HYDROCEPHALUS

SPINA BIFIDA & LATEX ALLERGIES

SUPPORT & RESOURCES

Family Support Service

Youth and Respite Service

Health Service Executive

Enable Ireland

Publications

Links

Glossary