Ttc after tfmr last week spina bifida

[Worried9months]

Hi all

I had a termination last week at 20 weeks for spina bifida.

I have been taking folic acid every day since January now and since the termination have taken 5mg.

My husband and I would like to try again as soon as possible. I've read varying things about taking folic acid for one month to 3 months before conception.

I've been taking the normal dose since January so obviously have some build up but since your body does not store it for more than 24 hours hence why you need to take it every day, do we really need to wait any amount of time or can we go ahead and try again after my first normal period

I'm afraid I have no answer to your question but couldn't read without saying how sorry I am for the loss of your baby.

I have spina bifida myself so had more folic acid for my pregnancies, my GP could do a blood test to check my levels before I got pregnant so you could get yours checked if you wanted to.

Hi thanks oddboots appreciate that. I wasn't aware of that.

I get upset when I read of people with spina bifida seemingly leading a normal life as I then doubt what I was told :( however I do know that the severity of spina bifida varies massively

I'm really pleased to hear u lead a full life though please do not take my above comment to sound otherwise!!

How have your pregnancies been? Were your children affected?

I'm so sorry for the loss of your baby.
I have not had direct experience of spina bifida, but my sister in law does, like odd boots she had her blood drawn to check frolic acid levels when she before and when she was pregnant. I would ask for this to be done.

Don't doubt, it is a hugely variable condition. I completely understand your decision, in your place I may have done the same. Mine is mild but I have a complication called tethered cord syndrome so my life is very painful and my mobility and continence is impaired.

My pregnancies have been fine, my children are generally fine although my ds has hypermobility which could be related.

Thanks oddboots. Was scared I had offended you there.

Do you have extra monitoring during your pregnancies and the AFP test?

I just want this pain to go away :(

Hello Worried. I think we might be in a very similar position to the one you found yourself in only a few weeks ago. We are going for our third (and hopefully conclusive) scan today. I am 14+2 today and they started suspecting something at the 12w scan (the guy who scanned us is a specialist in early anomaly scanning). I might therefore be going through TFMR quite soon and am terrified.
Like you, I would want to start trying again immediately after. Have you started yet? A month on, how are you feeling?

I totally understand if you would rather not share. Also please feel free to PM me if you prefer.

Sending you lots of supporting vibes.

Hi Worried, I have a 10 yr old dd with Spina Bifida, given your circs it is usually recommended that you take the higher dose of Folic acid for at least 3 months prior to conception, this is also the case if you are Epileptic and on anticonvulsants and diabetic.

If you want to talk please feel free xxx

Hello princes. I wonder why you need to take it for three months though - I read everywhere that the body doesn't store frolic acid and that stocks are renewed daily! Do you know the answer to this?

What form of SB does your dc have? Our baby has just been diagnosed with hydrocephalus and SB myelomeningocele (sp?). I'm 15w pg. We are broken...

Hi MademoiselleG, to be honest I am unsure why the need to take the folic acid for such a length of time.

My dd has Mylomeningocele and hydrocephalus, she also has scoliosis and other complications, she uses a wheelchair full time and is paralysed from the chest down although the spinal defect can be in any region, the lower down the spine the better as less area is affected.

If I can help in any way please don't hesitate to ask.

I had a tfmr at 21 weeks due to spina bifida and have just become pregnant. I am so scared of the same situation reoccurring. I don't think I could handle the loss and sadness again. I waited 3 months but mostly because I was having IVF and the doctor advised me to take a high dose (5mg) of folic acid for 2-3 months and allow my cycles to regulate. I now take my 5mg plus the normal pregnancy supplement with it in, plus a diet super high in it. Obsessing! Avoid the sun as it breaks down folic acid. Supposedly teas do too. My roller coaster is on my blog at www.wakeupsurvivesleep.com.
Im so sorry for your loss. Things will get better. All the best xx

Thank you Princes. It makes me feel so sad that your daughter is alive abs we are choosing not to give our child this option. We will never know what the right decision was/is. I am so sorry...

MademoiselleG, we all have to make the decision that is right for us personally, what is right for me may not be the best decision for someone else.

Please don't beat yourself up about it, you should never have to justify your choice to anyone and no one has the right to judge you for it, there is no need for any apology.

I hope everything goes as smoothly as it can for you, and please be gentle on yourself, wishing you all the best

Thank you for your kind and gentle words x

Oh and DRS - thank you for your advice and congratulations on getting pregnant again. I have everything crossed for you that all will be well x

I have spina bifida occulta and took 5mg of folic acid daily as soon as we started ttc