Spina Bifida Raising Awareness

Spina Bifida is a birth defect which affects the neural tube it literally means split spine, There are three main types of Spina Bifida the first being:

Spina Bifida Occulta (hidden),

People don't usually know they have this disability until later in life when they start getting back pain or other related problems.

The next one is

Meningocele

The baby is born with a sac on their back which contains tissues which cover the brain and CSF (cerebro-spinal fluid) which hydrates the central nervous system. Development of the spinal cord may be affected, but impairment is usually less severe than myelomeningocele. Meningocele is the least common form of spina bifida.

The third and most severe form is:

Myelomeningocele

This is the most serious and more common.

Here the sac or cele not only contains tissue and cerebro-spinal fluid but also nerves and part of the spinal cord. The spinal cord is damaged or not properly developed.

This means that there is always some paralysis and loss of sensation below the damaged region. The degree of disability depends very much on where the spina bifida is, and the amount of affected nerve tissue involved.

Another related problem with this type of SB is Hydrocephalus, children with this disability usually have to have a shunt fitted this is a devise that is inserted into the ventricals of the brain to drain away the excess csf which can cause pressure to build up causing severe headaches and possible brain damage worst case death.

My main reason for writing this is to make people aware that this defect develops in the first 28 days of the pregnancy this is very often before the woman knows she is pregnant.

Can Spina Bifida be avoided?

The answer is not always and sometimes but one thing is for sure using Folic Acid reduces the chance of having a baby with Spina Bifida, But and its a big but, you must be taking the Folic Acid before you get pregnant and continue using it until the 12 week of your pregnancy. it doesn't really help that much if you start using it after you find out because the Spina Bifida may have already developed although you should still take it until week 12 .

So what I am trying to say is that if there is any chance that you could fall pregnant you should be taking Folic Acid as a suppliment now.

Does Folic Acid ensure you will not have a baby with Spina Bifida - No, my daughter has a baby who has Spina Bifida and she did take the Folic Acid, we have a history of this disability in the family and although it has never been confirmed I think in my granddaughters case it might be genetic, but I wonder how much worse it might have been if my daughter had not been using this suppliment.

I am a college lecturer in child care and every young woman I teach gets the Folic Acid Lecture there is a new study now looking at another suppliment called inositol which seems to indicate that mothers with low levels of this are more at risk of having a baby with Spina Bifida.

Since my granddaughter was born I have made it my mission to spread the word about pre pregnancy suppliments.

Years ago I worked as a special needs assistant working 1:1 with a young man with Spina Bifida, I thought it just meant that he couldn't walk, I had heard lots of people say that Spina Bifida can cause mobility problems. This young man sometimes had accidents and i used to get cross with him because I thought he was just being lazy not wanting to go to the toilet.

I now know that most people with Spina Bifida have bowel and bladder problems, as the nerves come from the bottom of the spinal cord, so are always below the lesion. It is also necessary to have intact nerve pathways to the brain for complete control and sensation

For this reason some people with spina Bifida cannot feel that they need to pass urine. No-one told me this at the time and I feel so sad that I used to tell the young man off, it wasn't his fault. I feel angry that the school, never bothered to research this disability or give me the information I needed to help him.

I remember when we found out that my granddaughter had Spina Bifida loads of people said oh its not so bad lots of people have Spina Bifida and don't even know it, actually it is a lot more complex than people realise and if by taking a simple suppliment it means that you don't have a baby with this disaility surely it has to be worth it.

When a baby is born with MMC spina bifida it is necessary to close the leision very soon after birth to avoid further damage to the spinal cord and to help prevent infections like meningitis taking hold. nobody want their new born baby to have to undergo surgery so it makes sense to take precautions and use the Folic Acid before you get pregnant.

I have a lot of contact with people who have children with Spina Bifida these parents do everything in their power to help their children. The children themselves seem to take their disability and related SB problems on the chin, they seem to be very happy children and lots of them lead relatively normal lives.

One thing that really helped me and my daughter learn about day to day living with spina bifida was the support groups on Facebook, other online groups and ASBAH a fantastic charity who offer practical help and support from the very start. There are also other charities who help children with disabilities one which immediately springs to mind is Parley online.