Baby with possible Spina bifida

[diamonds2023]

I’m posting to ask experiences of babies born with spina bifida.
im around 19 weeks and babies head size is small with shape slightly abnormal with suspicion of Spina bifida. Consultant was unable to get a good image of spine to confirm but that is her suspicion.
I am asking for experiences and if anyone has been through the same please ❤️

I know a little boy who is 3 now with spina bifida, his mum had surgery about 25 weeks gestation, then she delivered at 35 weeks. He shows no physical signs of the condition though he does have it genetically speaking. He runs, full bladder control (better than many 3 year olds) etc. Get as much information as you can and see if you are a candidate for surgery.

I know an adult with spina bifida who is older, uses a wheelchair but can walk very short distances, drives, works full time, married and has 2 children

Hi Diamonds 2023. You will get varying stories from parents, medics, and also those of us with spina bifida. The main things about spina bifida are that it has varying severities. Spina bifida occulta is the ‘mildest’ where though the condition is always is always the neural tube or spinal column not closing during pregnancy which can potentially lead to paralysis of limbs, potential brain damage. Occulta has very small of any signs of any of these. People generally can walk, learn, live a normal life with little effect.

I do not know statistics of any of these things, I only know my own experiences.

spina bifida myelomeningocele (long word for the muscles around the spinal column in basic terms) is the most severe, which I and many people I have grown up around have. Now again, it comes in many different forms. I was born in the 70s, my parents were told to expect me not to walk, talk, learn, work, etc etc… and if it weren’t for the faith my parents had themselves they might have taken their advice but they didn’t and I’m here now because of them. I have worked all my life, am a full time wheelchair user, loved sports when I was younger, am married I have a 20 year old son who I adopted. Through personal choice not because nobody told me I couldn’t. That’s personal choice for everyone. I have a full and happy life. I work cor the NHS. It hasn’t been all without my challenges in life. All I can say from my own perspective and experiences is listen to what your own mind tells you, gather lots of personal information and experiences from people and if you haven’t already Contact your local spina bifida charity whatever you are. Shinecharity is a big one - you’ll get so much help and advice. This is probably a lot of reading but I really hope you get the help and advice you can to support you and your family. Wish you lots of luck and here if you ever need to ask away xx

There is a woman on tiktok her account is Taylormade she has 4 boys and one has spina bifida. She talks a lot about his diagnosis and original prognosis, it might be helpful to watch some of her content (she is religious though so it depends if you can stomach that).

The wee boy Jude is 3 and so happy and vibrant and chatty, just an amazing wee guy.