I think I know a little bit about about Downs Syndrome but what about Spina Bifida?

[Caz10]

Currently in the scary 2 week wait period while my blood test results come back. I think I am reasonably well informed re DS, and have worked with children with DS before. When people on here are talking about pre-natal screening it is almost always DS that is mentioned.
But does anyone have any experience/knowledge re SB? Would it be a more or less worrying thing to be at risk of? Any information would be very gratefully received!

[honeyapple]

SB is when the spine doesnt form completely. Children can be affected to a greater or lesser degree depending on where the hole is. My DD was sent for tests for SB when she was newborn as she has a sacral dimple (small indentation at the base of her spine) which can be a sign of minor SB. Fortunatley she was fine. Some children have minor issues with walking and general movement issues, others would be wheelchair bound. And in very severe (and rare) cases the baby would not live.

I am not a doctor, but I looked into SB when I had the scare with my DD.

[Caz10]

Thanks honeyapple. Glad your DD is fine. Is SB less common that DS do you think, is that why it is discussed less?

[snowleopard]

AFAIK, if you've been taking folic acid, or have had enough of it in your diet, that should hugely reduce the chances of spina bifida. (Someone correct me if I'm wrong...)

[honeyapple]

I dunno what the % of births are with SB. I think because a lot of food is fortified with folic acid that it is probably less common than it once was , and that most PG/TTC women are actively taking folic acid supplements.

[daisyboo]

MY MW told me that SB is less common these days because of foods being fortified with folic acid and people being better educated and taking supplements. The doctor confirmed that if you eat a healthy balanced diet the risks are minimal, whether you take a supplement or not.

My cousin has SB, and although he had to undergo several operations as a child and was in a spinal brace for about two years, and now walks with the aid of sticks, he is 40, has kids and leads a fairly active and normal life.

[spud01]

My 15year old stepson has spina bifida acculta which is 1 of the milder forms. His main difficulties is leg co ordination, eg he cant kick a ball in the direction he wishes to go. Usually there is 2 days a week he will feel quite a bit of lower pain. Somitimes the sb also affects his bowels, he doesnt always have the same control as pthers of same age and soils himself. In the main otherwise it doesnt not affect his life, he is like any other teenager

[cantseemyfeet]

I was told at my 20 wk scan that my daughter had severe SB aswell as water on the brain(it has a fancy name but im not going to attempt to spell it). It was 7 years ago now and the doc told me that the chances of having a baby as poorly as her is around 1 in 75,000. I was told that she would probably die during labour or shortly afterwards if I decided to carry her full term so I made the decision to be induced early and gave birth to her at 23 weeks. I was really poorly with an abcess on my tooth when I fell pregnant and they think that because I wasnt eating properly it was a huge factor, it is basically down to diet ESPECIALLY folic acid which is essential for the spine. Doc said I was just very unlucky and I have gone on to have a healthy baby boy and due another (hopefully healthy) boy in 3 weeks, scans show everything looks ok and I have just made sure I have eaten lots of food with F.A in aswell as taken the tablets.

[Caz10]

cantseemyfeet thank you so much for posting I really appreciate it, and I am so sorry for what you went through. So glad all is going well for you at the moment!

Isn't that scary, you must have been very unlucky as I'm sure there are plenty of mums to be out there who do not look after themselves well and don't eat properly.

I took my FA for a couple of months while TTC (although not as long as I would have liked as we fell pregnant much sooner than anticipated!) and am still taking it, so fingers crossed all is ok.

[cantseemyfeet]

Hi Caz10,
Dont worry you will be fine, the doc told me I was just one of the unlucky ones, in fact folic acid was only discovered to help prevent SB a few years back. It apparently wasnt about when I was being born! I didnt know I was pregnant with the last 2 till 6 weeks so had no chance to take FA until then but I started it straight away and last son was fine and hopefully this new one is going to be ok too. It is pretty rare these days because FA is added to a lot of foods so dont worry yourself about it. You will have a healthy baby before you know it. Take care and good luck

[MrsMcJnr]

Caz10 - just wanted to say that I too didn't know much and wanted to do more so did a little chart for myself, I'd be happy to share it with you if you want to CAT me. From memory, neural tube defects effect 1:500 in the population.