spina bifida

[Tree76]

im 21 weeks and just found out my baby boy has spina bifida, i dont know what to do. Have been told will need wheelchair and have bladder problems also has club feet. any advice please

[peregodia]

We got a baby boy diagnosed with spina bifida in Oct-2014.We found it is possible to have a surgery while in womb, window is 20-24weeks, no later/earlier than that. The surgery is performed at Kinderspital in Zurich, by Prof. Martin Meuli and his team. You need to request NHS to cover the costs through an S2 form. NHS covers the costs of tests, surgery and hospitalization. Our boy has now much better chances than if he wouldn't have been operated. If you need more info you can contact us at [email protected].

[Confused2011]

Hello Tree, so sorry to read your post. This must be a really difficult time for you.

Spina bifida causes a huge spectrum of disability, although I don't think it affects people's mental abilities, just their pelvis and legs. I wondered whether you have been offered a specialist scan at a teaching hospital? Eg in London you could ask for a second opinion scan at Great Ormond Street Hospital. Spina bifida can be very severe, but on the other hand it's thought that 5-10% of all people in the world have spina bifida occulta, which usually has no symptoms at all and is only discovered if the person has a spinal x-ray for another reason.

Here are a couple of other websites which may be useful:

www.nhs.uk/conditions/Spina-bifida/Pages/Introduction.aspx
(click on the links to other pages on the bar about 1/3 down the page)

www.asbah.org/

www.gosh.nhs.uk/gosh_families/information_sheets/neural_tube_defects_myelomeningocele/neural_tube_defects_myelomeningocele_families.html

Also, if you're deciding whether or not to continue the pregancy you can contact the charity ARC. Everyone on their telephone lines has been in a similar position to you.

www.arc-uk.org/

Finally, if you're planning a future pregnancy you'll probably want to think about taking D-chiro-inositol supplements, as well as the full dose of 4 or 5 mg folic acid, starting 3 months before the pregnancy, not just the 400 mcg everyone else takes. The Ponti study below is looking into how effective D-chiro-inositol is in preventing spina bifida in cases where a woman has had a pregnancy with spina bifida despite taking folic acid and it sounds as though you'd be eligible to take part. You're also entitled to get specialist advice about planning future pregnancies. For example, the genetics team at Great Ormond Street is happy to meet mothers who've had a spina bifida pregnancy to discuss this.

www.ucl.ac.uk/ich/research-ich/neural-development/ponti_study

Good luck over the coming weeks, and I'm sure you'll get a lot of support on Mumsnet and from your friends and family, whatever decision you make.

[lilly13]

i am so sorry! sending you hugs. how can they know for sure just from the scan? hope you get lots support. xxx

[4pudding]

Do contact the support group posted by G1nger. also the antenatal tests forum may be able to offer you more advice. www.mumsnet.com/Talk/antenatal_tests_choices
Big hugs Xx

[Jill72]

Very sorry to hear your news - I would imagine this is going to be a step by step journey for you and your family. One thing at a time and perhaps that is just taking some time to let it sink in first. Hope you get all the support you need.

Jill x

[G1nger]

I'm so sorry for you, too. I wonder if it would help you to contact a family support organisation: www.sbhp.org.uk/

x

[SilveryMoon]

Oh, I'm so sorry, must be a shock for you.
I cannot help, but didn't like to see this unanswered.