Everything you need to know about living well with spina bifida

This guide will provide spina bifida information to help and support those living with the condition and their families. This guide will also look at commonly asked questions about spina bifida, including, what is spina bifida, what causes spina bifida, what are the main types of spina bifida and what are the symptoms of spina bifida?

Any medical information provided here is for informational purposes and does not replace medical advice given to you by a medical professional. If you are concerned about any aspects of spina bifida, please talk to your GP or paediatrician.

What is spina bifida?

Spina bifida is a congenital condition, present from birth, which can usually be detected before a baby is born. ‘Spina bifida’ literally translates to ‘split spine’, and the condition occurs when a baby’s spinal cord does not develop correctly. It is called a ‘neural tube defect’.

There are two types of spina bifida, one being more common and less severe than the other. Around 5-10% of babies are born with a milder form of spina bifida, whilst the most severe form is very rare, with only around 1 in 2000 babies born with this condition.

Spina bifida symptoms are likely to be experienced throughout a person’s life; they may have some form of disability or difficulties with certain everyday tasks as they grow up. Some people may have physical or learning difficulties or both. Some may use a wheelchair, others will not. Each person with spina bifida is an individual and will be affected differently, with different spina bifida symptoms. The condition is not just one experienced in childhood; and there are many adults living with spina bifida.

There are treatments for spina bifida available, but there is currently no cure, although research continues.

For a comprehensive spina bifida explanation, visit the “Shine” charity website and read their section on ‘What is Spina Bifida?’

What causes spina bifida?

As a foetus grows in the uterus, there is potential for certain body parts or bodily tissue to not form as they should. This is the case with spina bifida. Spina bifida occurs when a baby’s neural tube, which is the tube-like structure that eventually becomes a spinal cord leading from the brain, does not develop properly. The neural tube usually fuses together to create the baby’s vertebrae by around the 4th week of pregnancy. Sometimes, this does not happen, and there can be gaps in the spine and, in severe cases, spinal cord tissue can sometimes be pushed out of the vertebrae.

Exactly what causes spina bifida to occur in some babies and not others is not clear, but scientists believe there are several possibilities and risk factors, including:

• Folic acid or vitamin B9 deficiency in a pregnant mother may be a high-risk factor – all pregnant women or women planning to become pregnant, are instructed to take folic acid vitamin supplements to help prevent spina bifida and other neural tube problems in their babies. Experts still do not understand how folic acid can help prevent the condition, but research proves there is a link. For more information about why folic acid is so crucial to take when pregnant, visit the NHS website
• Family history – if you or a family member has spina bifida or any other neural tube defects, you are at a much higher risk of having a baby with a similar condition, and will need to take a higher dose of folic acid if you become pregnant
• Taking epilepsy and bipolar medications such as valproate and carbamazepine may also be a risk factor for spina bifida
• If a mother is diabetic or obese, there is also a higher risk of having a child with spina bifida

Visit the NHS website for more information on what causes spina bifida.

What are the main types of spina bifida?

It is important to understand the difference between spina bifida types because the type your baby is diagnosed with will determine the treatments available and probable spina bifida symptoms that may be experienced. If you are told that your unborn baby is likely to have spina bifida, a specialist may be able to tell you what type of spina bifida the baby has and will help explain to you what challenges your baby may face.

The main types of spina bifida are:

• Spina bifida occulta
• Meningocele
• Myelomeningocele

Spina bifida occulta

The most common type is where the bones in a baby’s spine have not formed correctly and leave a small gap. It is possible that this type of spina bifida is not detected during pregnancy scans, and some people may have this and not even realise it, because they have few or no spina bifida symptoms. For more information about spina bifida occulta, download this leaflet from Shine.

Meningocele

A more serious type, where some of the membranes that protect the spinal cord push through the gaps in the spinal column, which appear as sacs or lesions on a baby’s back. This is noticeable from birth and can be surgically corrected, but there are likely to be remaining symptoms depending upon where along the spinal cord the problem occurred, and how much the nerves are affected. Many babies born with this type of spina bifida also have hydrocephalus, which causes water on the brain.

Myelomeningocele

This is a very severe type, similar to meningocele spina bifida, but where a baby's spine is open in lots of places, with spinal tissue (membrane) pushing through. Read more about Myelomeningocele spina bifida.

What are the symptoms of spina bifida?

The type of spina bifida symptoms a person has will be determined by whether they have spina bifida occulta, meningocele spina bifida or myelomeningocele spina bifida. Symptoms will also depend on where along the spinal column there is a gap if spinal membranes or the spinal cord is damaged, and what treatment options are possible.

If you have been given a diagnosis of spina bifida for your unborn baby or newborn baby, you are likely to have lots of questions, concerns and feel uncertain about the future. It is important to remember that spina bifida affects everyone differently and to varying degrees. It is likely that the most common type, spina bifida occulta, will not cause any symptoms, and there are treatments available for other, more serious types.

Spina bifida can cause:

• Lower limb weakness or paralysis
• Problems with bone development due to muscle weakness
• Urinary incontinence, urine infections, kidney problems
• Bowel incontinence or constipation and diarrhoea
• Hydrocephalus – associated with more severe types of spina bifida and caused by fluid in the brain that builds up due to the spinal cord being unable to function properly. For more information on hydrocephalus, visit the Shine website
• Learning difficulties, e.g. problems with short-term memory, hand-eye coordination and concentration

Diagnosis of spina bifida

Pregnant women in the UK are usually offered an anomaly scan around the 20th week of pregnancy. This scan looks in detail at the baby and checks the development of organs and body parts such as the spine. An open spina bifida, meaning there are visible gaps in the spine with a sac, spinal fluid or spinal cord coming through, is usually visible on the scan. If this is the case, the pregnant mother and her child will be referred to a team that specialises in congenital conditions. A specialist will explain what this spina bifida diagnosis means, what spina bifida treatments are likely to be available once the baby is born, and the likely outlook for your baby’s health and quality of life in the future. Your doctor may also discuss with you options to end (terminate) your pregnancy.

For further information on diagnosis of spina bifida and what will happen next, download this NHS Patient Leaflet.

If your baby has been diagnosed with spina bifida before birth, you may be keen to understand what will happen when they are born. The Southampton Children’s Hospital website provides information about what to expect when you have a baby born with spina bifida.

Living with spina bifida

Here we discuss several aspects of living with spina bifida, including treatment for spina bifida, products that may help with daily living tasks, employment and spina bifida help and support services that are available.

Learning that your child has spina bifida can be difficult to take in and you may need some time to come to terms with this. Everybody experiences spina bifida differently and the amount to which their daily life will be affected differs greatly from person to person.

Treatment for spina bifida

Most babies born with an open spina bifida will require an operation quite soon after they are born, usually within the first day or two. This surgical procedure will put any spinal tissue or nerves that may be pushing out of the spine, back into place and close the gaps in the spine.

Babies with hydrocephalus will also need surgery to insert a shunt into the brain, which is a tube designed to drain fluid from the brain into the stomach or other areas of the body. It is likely that a baby will require the shunt to be in place permanently. After many years, sometimes a shunt needs replacing and the surgery has to be repeated, but some people live with an original shunt.

These surgeries are essential to ensure a child lives, but they do not necessarily mean there will be no long-lasting symptoms of spina bifida. Some people may require other surgeries to improve incontinence or bladder and bowel problems, for example, some people undergo a colostomy procedure.

There are many therapeutic treatments available to help a baby, child and adult to manage their symptoms.

Physiotherapy may be able to help a baby develop muscle tone and the ability to roll, sit up and walk, then as a child or adult they may help to manage muscle weakness, paralysis, joint and bone development problems and movement.

An Occupational Therapist (OT) may be able to assist with daily living tasks that are difficult due to having spina bifida, for example, dressing, using the toilet, or getting around. Read on to find out about how living aids may be able to help.

Some people with spina bifida do experience pain, which may stem from damage to nerves, or it may be musculoskeletal pain from muscles or bones. Speak to your GP if you are in pain. There are medications available that may be able to relieve your pain and complementary therapies such as acupuncture can also help. Some people also choose to learn how to manage pain with psychological techniques and your GP may be able to refer you to a pain management clinic or classes. To find out more about further treatments visit the NHS choices website.

Impact on daily living

Most people with spina bifida are able to live long and full lives. Some may have physical symptoms and disabilities that they need to manage throughout their lives, but with the right support, equipment and treatments, they are still able to do many things that people without the condition are able to do.

If you have a child with spina bifida, you may be concerned about what school they will go to and what they will achieve in their education, just as any parent does. Many children with spina bifida attend mainstream schools and go on to further or higher education. Some require learning support, and some may have their needs better met at a specialised school, just as with any child.

Contact Shine to speak to their educational advisors to discuss with you how to find the right school for your child. Shine also provides a College and University Guide for students with Spina Bifida.

Sometimes it can help to hear other people’s stories and experiences of having spina bifida, or of having a child with spina bifida. The Great Ormond Street Hospital website provides a case study ‘Living with spina bifida’ that may provide useful spina bifida information for you. The Shine website also features a section called In Your Own Words which features several case studies from people of different ages living well and positively with spina bifida.

Looking after your health is really important if you have spina bifida, and can help prevent you from developing other health conditions. For more advice on how best to do this, Shine provides a comprehensive leaflet about Taking Care of Yourself.

Spina bifida products

At Complete Care Shop, we are experts in living aids, which are products designed to help make everyday tasks easier if you have a healthcare condition, disability or reduced mobility. Here, we provide a list of products that may be useful if you or your child has spina bifida symptoms and are finding some aspects of daily life challenging.

This is by no means an exhaustive list. If you are looking for a product that may help you, we have an expert advice team who would be happy to offer advice on the best equipment to suit your needs.

PLEASE NOTE: Our Expert Advice Service can only advise about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.

Exercise for spina bifida

It is important for a child or adult with spina bifida to exercise regularly. The NHS provides lots of tips on how to get active with a disability if you are an adult that needs to increase your exercise levels, and the Change 4 Life website provides lots of ideas for accessible activities for children with disabilities and special needs. At Complete Care Shop we offer an extensive range of exercise and rehabilitation aids to assist those with reduced mobility.

If you think you or your child needs to exercise more, speak to your GP or specialist team for advice. You may be referred to a physiotherapist.

Spina bifida diet

Eating a healthy diet is essential for everyone to remain healthy. Some people may experience spina bifida symptoms such as constipation and urinary tract infections (UTIs) so it is important to eat high fibre, vitamin rich foods and to drink plenty of water. The Change 4 Life website provides lots of advice about how to eat more healthily as a family.

Spina bifida and employment

Many people with spina bifida are able to work and young people are able to attend education. The government’s Access to Work scheme aims to help people with a disability or health condition to find work by providing financial and practical support. Shine also provides information on Employment and Disability regarding rights, how to find suitable work and voluntary work options.

Support

We hope this spina bifida information has been helpful to you if you or your child have spina bifida, or know someone with the condition.

It is important to remember that whilst spina bifida may present many challenges, there are ways to live well with the condition and lots of opportunities for many people with spina bifida. You are not alone in your situation and there are also lots of other places you can go to find advice and information. We have provided links to forums where you can talk to other people affected by spina bifida, and a list of other websites that may be of interest to you. If you are concerned about anything you read in this guide, please discuss it with your GP or specialist healthcare team.

Communities

Shine40plus – a community of people aged over 40 with both spina bifida and hydrocephalus who discuss a range of issues and experiences

Spina Bifida Connection – a US based forum for people affected by spina bifida

Shine Through Youth – a Facebook group with members from around the world, who come together to share their feelings and experiences of spina bifida

This is me Facebook group – a group run by the charity Shine which brings together 11 to 17 year olds with spina bifida and/or hydrocephalus

Resources

• Contact – a charity for families with disabled children, which provides a Freephone helpline where families can get information, support and advice, as well as many guides on caring for children with disabilities
• Newlife – a charity supporting disabled children and their families, by providing care services, a helpline, equipment grants, equipment loans and nursing support
• NHS – medical information about causes, symptoms and treatments for spina bifida and related conditions such as hydrocephalus
• Scope – a charity dedicated to supporting people with disabilities and their families, providing an online community, a confidential helpline and advice on many aspects of being a person with a disability of all ages
• Shine – the leading UK charity for people with spina bifida and hydrocephalus, providing many networking opportunities for people to get together for support, as well as medical information and guides to the condition
• Spina Bifida Hydrocephalus Scotland – created by parents of children with spina bifida, this Scottish charity provides information about the condition and provides services to families such as a helpline, workshops, youth clubs and respite

Glossary

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of spina bifida as straightforward as possible.

Anomaly scan

An ultrasound scan offered to pregnant women between 18-21 weeks of their pregnancy, which checks for physical abnormalities of the growing baby whilst in the uterus

Colostomy

An operation that temporarily or permanently redirects part of the bowel (intestine) so that poo is collected in a bag attached to the stomach – undertaken due to severe conditions affecting the digestive system or anal region

Hydrocephalus

A serious condition where spinal fluid accumulates on the brain, which may be present from birth or develop due to head injury, stroke, or other conditions

Membranes

In the body, membranes are thin sections of tissue that protect organs and other areas of the body, such as the spinal cord

Open spina bifida

Where a gap or several gaps in a baby’s spine have resulted in the spinal cord and membranes pushing through the gaps to create a sac or cyst on the back

Shunt

A valve controlled medical device inserted into the brain. It is designed to treat hydrocephalus and pull excess fluid away from the brain into another area of the body such as the stomach

Spinal cord

A mass of nerves and tissue enclosed within the bone structure of spine which forms the central nervous system and transmits messages around the body and to and from the brain

Vertebrae

The many bones that make up the spine/back

Spina bifida information

We hope you found this guide useful and that it has provided you with the spina bifida information you were looking for. If you have any further questions or queries you can head to our handy help and advice section for more guidance. 

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