Wrong advice from doctor re history of spina bifida

[sooperdooper]

This morning I had a GPs appointment, and mentioned while I was there that me & DH are planning to start trying for a baby in the next few months and could he offer rany advice, especially since there's a history of spina bifida in DHs family

The GP just said, no there was nothing specific I could/should do, and I'd be offered an amnio test during pregnancy where they'd check if everything is ok

Now, I was a bit surprised at this because DHs sister has mentioned taking suplements in the past, so I checked and on the NHS website there's clear guidance about taking folic acid, how much etc, especially where theres a link to spina bifida

www.nhs.uk/conditions/pregnancy-and-baby/pages/planning-pregnancy.aspx

I feel like I've been fobbed off and given crap advice, what if there's other things I should know, I know it's the NHS website but I'd rather not just get advice online, I'd prefer to speak to a doctor who can actually give me proper advice :(

Should I go back and speak to another doctor?

The first question I was asked when I went to GPs with each pregnancy was whether I'd been taking folic acid while TTC and also to carry on with taking it.

Maybe he assumed that that was obvious - is something I thought most people were aware of - and that wrt to the family history, there's nothing in addition to that that you should be doing.

"Certain mutations in the gene VANGL1 are implicated as a risk factor for spina bifida: These mutations have been linked with spina bifida in some families with a history of spina bifida." comes from t'internet, but the only advice really is to take folic acid and see.

Is there a history of it in your family, or just DH's? Iirc, the thinking is that neutral tube defects are linked to a gene in the mother, so risk on DH's side shouldn't increase your risk above the average. But your GP should have explained this.

But yes, you should be taking normal dose folic acid way before conception. If you're at risk, dosage goes up to 5mg.

Have to say GPS don't actually get that much training on things like that. But some who are wankers wont admit it and refer. I would ask for a referral to a specialist if you want better advice. I know if you've had one pregnancy with SB the advice is high dose folic acid, but it would be good to know the proper advice for you.

I was worried about this as my Dp's nan lost a baby to spina biffida. My mw wasn't overly concerned at my booking in appointment as she said the risk was smaller because it wasn't on my side and that my family history was more important than his. HTH a little x

sooperdooper you should start taking folic acid as soon as you decide to start trying (i.e. now) and then continue till at least week 12 of pregnancy. Alternatively you can take conception supplements which contain folic acid among others. Once you're pregnant you should also start taking Vitamin D - again you can take pregnancy vits instead which contain folic acid, vitamin D among others. I am surprised your GP didn't mention folic acid (irrespective of family history of spina bifida, this is standard advice that is given to every woman trying to conceive) I've been told this by every GP and midwife I've seen. If you are feeling concerned you should try to see a different GP but as far as I know this is all you are supposed to take.

Habbibu the history is on DHs side, so maybe you're right, I wish he'd explained that though!

Yes ladyMedea that's it really, I'd just like to know the proper advice for me, and to have it explained by the doctor, I'll speak to Dsil and see if we can speak to her specialist :)

Maybe specialist is a little extreme, I'll just book in to see a different GP and ask again

Actually, according to the spina bifida charity, it just says "families with a history"here. Ask another GP, with ref to this.

Thank you :)

Hi sooper! Congratulations by the way..

For what its worth i dont think your gp is giving naff advice as such.. i think maybe he means that theres nothing specific you should or shouldnt be doing in comparison with a totally "normal" couple ttc. Its reccommended to take folic acid up until 12 weeks for everybody and he should have given you tips to help ect but think he means just treat it like there is no risk.
Obviously as a gp he only has a limited knowledge on some things so i would say speak to other families with it ect and dont hesitate to get a second opinion if you think you need it!
My guess would be that at the ttc stage, theres not really a lot you can do to reassure yourself, but once you get your bfp and are allocated a midwife she should be able to look further into this for you and advise you more. Good luck!

Tbh, once you've conceived, and got your bfp, it's almost too late for FA. The first 28 days are crucial, so the OP is doing absolutely the right thing to get advice before ttc.

You need 5mg of folic acid which is recommended for anyone with a family history. You can only get this dose on prescription so go back and make a fuss till you get it.

I have a family history and we lost a baby this way so am sure of the facts.

Best wishes

Well, slight qualification in that I don't know how far back the history in your DH family goes, or how close a relative. But if there is any reason to think you are more at risk than the average you should be on the higher dose. And there are vv few risks or side effects associated with the higher dose - I've been taking it for ten years just in case of accidental pregnancy - so I would expect any dr to be fairly ready to offer it.

All the best.

I had a previous pregnancy which ended at 22 weeks because of anencephaly which is a very severe neural tube defect. I was told that Id be more likely to have another pregnancy with a neural tube defect even though the condition my baby had was like a 1 in 1000 chance of happening. When we decided to try for a baby this time I went to the doctors first and explained. I was given a prescription for 5mg folic acud tablets to take every day a month before conception and up till i was 12 weeks pregnant. I think the ones you buy in the chemist are 0.4mg. I obviously did a lot of research with this time and i also read that by taking folic acid tablets before conception and during the first trimester you can reduce the chance greatly. I think your doctor shouldve been able to explain this to you however ive always been given the impression by doctors, midwives etc that what happened in my previous pregnany was 'just one of those things'

Thanks all, I've made an appointment with a different GP next week, I'm going to print out the page from the spina biffida & NHS websites and take them with me too

Also, the doctor I saw gave me a completely wrong prescription as well!! For an old medication I don't take anymore! So need to get that sorted too

It's DHs brother and sister who both have the condition, DBil more severely and Dsil less so but she's had to have many operations

Actually the 'Two Action Medical Research' results showed that taking folic acid in the last 12 weeks of pregnancy greatly reduces and/or eliminates the chances of spina bifida completely.

Link of Research and Results
Spina Bifida Educational Resource