Anyone else found out they are pregnant after losing a baby at 23 weeks with spina bifida?

I already have a little girl who is almost 2 and completely healthy but I was pregnant again last year and everything was fine until our 20 week scan when they discovered that the baby had severe spina bifida which resulted in me having a still birth at 23 weeks. I am now 5 weeks pregnant again and I am terrified its going to happen again and I won't know until at least 16 weeks and I don't know how im going to get through the 12 week scan etc knowing it could all go wrong again. I was wondering if anyone else had been through the same thing and what the outcome was?

12 Replies

  • Hi hun, sorry for your loss. My story is similar to yours I lost my first baby at 20wks but she had turners syndrome. I can completely understand your anxiety. Did they give you a percent of it happening again? I had a 1pc chance of it happening again and ive now got three healthy children. As awful as it sounds but we got very unlucky but im sure all will be fine this time round and you have your beautiful girl already too and i know losing your angel was heartbreaking but try and remain positive hun xxx

  • Hi I have a 4% (1 in 25) chance of it happening this time which I know are pretty good odds but then I think about the fact the last time the odds were 1 in 1000. I know that I need to try and stay positive but I can't help fearing the worst. Its such a roller coaster of emotions right now.

  • Its completely understandable that your fearing the worst hun, I did with all my other pregnancies. Is there anyone you can talk to? Either family or even a charity helpline? The next few weeks are going to go slow and be tough but have faith in yourself, im sure things will be perfect for you this time. Wishing you all the best hun xx

  • I am really really sorry for your loss. I can't even begin to imagine how devastating it is. I think in cases like these it helps to achieve some closure in order to be able to move on e.g. understand why it happened and how to protect yourself in the future if possible. I hope you received some appropriate medical guidance and counselling. As I am sure you know better than me, folic acid is pivotal in preventing spina bifida. Please keep positive and take good care of yourself xxx

  • it happened to a young girl i worked with , within mts of loosing baby she was pregnant again and im presuming shes had her healthy little girl as she was a few weeks ahead of he and im due 4 c section fri , everything was reported as fine when i went on mat leave a few weeks ago . all i can recomend is make sure ur taking ur folic acid and maybe ask if u increase the normal dose if it can help in any way . sometimes its just 1 of them things and unfortunatly theres nothing can be done ... most of the time its good rather than bad news , stay strong and positive .

    also a friend of mine lost her son at 22 weeks due to multiple health problems , she had an older son without any worry and a son now 7 after the baby she lost without any complication.

    also a friend lost her baby last year , at a routine midwife appointment around 17 weeks no heartbeat was found , she is now the very proud mother of 5 mth old daughter : )

    thats 3 i know have lost babys later on in pregnancy and went on to have healthy babies after , not to mention the numerous women who have misscarriages b4 12 weeks , all gone on to have babies after . good luck and best wishes.

  • Hi, sorry to hear that you had to go through that. My mum many moons ago was pregnant with twins and lost one of them during her 2nd trimester and the other twin was born full term but then past away when she 7 months old, back in the later 70s they found out she had a severe form of spina bifida and advised my mum not to have any more children, she then went on to have 4 of us but we all had to be tested for a specific gene incase we were carriers, my brother and sister went on to have healthy children and I'm now 34 weeks and having a healthy pregnancy and we are all carriers of this gene, good luck with the rest of your pregnancy and try not to worry to much if possible xx

  • Thank you all for your kind words and support. It means a lot to know that there are people out there that understand how hard it is because although all my family and friends say they know how hard it is I know that they don't fully understand as they have never lost an angel and been in this situation.

  • Hi, My story sounds identical to yours.

    I lost our little girl at 21 weeks due To spina bifida and hydrocephalus. I got pregnant again 3 months later and in all honesty, I couldn't relax until our baby boy was born and in our arms.

    It's absolutely devastating losing a baby and although family and friends are amazing, I agree with you - until you've been through it you can't completely understand. I think about our little girl ever day and still cry a lot. It'll be 2 years soon since I lost her and it hasnt got any easier. But, with all that said, I count my blessings every day as I have 2 beautiful boys! I am so lucky xx

    Good luck with your pregnancy, I'm sure all will be well. X

  • I had a baby with severe spina bifida and am 3mnths pregnant with my 3rd child plse dont be scared u will b fine whatever happens im so sorry u lost ur baby that must of been alful for u I had mine as i said and im not going to lie it not easy habing them life can be tough but the joys are so worth it I was told all the way through my pregnancy and after that he was going to die and askex and 21 times to abort him I refused hes 3years old now so that says it all trust yourself and u will no what to do I new I could do it and I have I do worry that this baby will be the same but not so much I no I can handle anything now and so will u gd luck and dnt stress what will b will b and stress can cause more problems xx

  • Hi there, tinkabell41...

    It looks as though you posted your original fears and shared your experience over 2 years ago. Well, I have been searching the net and your experience and fears seem very similar to mine.

    I had a baby boy with severe spina bifida - open spine along with significant excess fluid on the brain and was forced into an abortion at 23 weeks. We found out there was something seriously wrong at 20 week scan, and prior to that I had fortnightly scans from 5.5 weeks up to 12 weeks (due to previous miscarriages with my ex partner).

    We saw various professionals, consultants, had 3d/colour scans at Oxford hospital as there wasnt't the same equipment at my local Swindon hospital, and it wasn't an easy 3 weeks learning all the facts, and then ultimately our decision, but strongly advised by every medical professional that we met. We also met Neurosurgeons who would have carried out surgery once the baby was born who advised us that chances of our baby surviving child birth were very slim - not to mention multiple operations from day 1 of life, which would be ongoing, with no certainty of survival. We couldn't bare the thought of putting our precious baby boy through such pain and so we went through the horrific abortion procedures which went on for 7 days as my body didn't want to let go, and had a still birth with little Ethan at 23 weeks. Followed by a funeral service nearly a month later - a horric month, and a day which no mother should ever have to experience but was a day that naturally followed after losing a child. It was a very private day, just myself and my partner, afterward we took the ashes to a hilltop in Oxfordshire amongst some trees, very peaceful, and where my partners brothers ashes were scattered - he lost his brother when they were teenagers.

    Now, I find myself nearly 34, no children, but my partner has 3 from a previous marriage - we are very much a big part of their lives, he is not a distant father, and my partner shares custody with his ex wife to raise the children. So I have become step mother to 3 glorious children who sometimes I mother, sometimes I am like a friend, sometimes a sister - they are mixed ages from 8 years, 14 years and soon to be 18 years is the eldest.

    I am now around 9 weeks pregnant and am absolutely petrified... I am not sure of what will happen due to my past with miscarrying, and what we went through with Ethan... however, what I do know is that I have a wonderfil loving family of my own now regardless. I have seen many professionals since Ethan, and have had counselling. Everyone tells me there was nothing whatsoever I could have done. Before Ethan I was taking 400 micrograms folic acid about 2-3 months before conception. I started taking iron supplements on prescription and vitamin D soon after learning I was pregnant (iron for anaemia), and stopped taking folic acid at 12 weeks (and continued with the vitamin d and iron supplements). I was following all the nutrition guidance, what not to eat, etc - always being very careful.

    After giving birth to Ethan, I was put onto high dosage of 5 milligrams folic acid and told to keep taking it up to pregnancy, and only up to 12 weeks - and that is what I am sticking to, and is what I have done. I am following all the nutrition guides as before, I am not anaemic as yet so no iron supplements for me... they also say my first scan this time around will be at 12 weeks, and not before, I am considered low risk for a miscarriage. They will scan me at 16 weeks, on the 3d/colour scanner and that is when they will determine health and nero defects like spina bifida. I have also been informed that the chances of a second pregnancy, following a case of spina bifida in your first pregnancy, are much, much smaller. Chances in general for everyone is 1 in 1000 of pregnancies, and second pregnancies is approx. 3.5%.

    Therefore, all stats, and everyone telling me, be calm, and no reason for anything to suggest anything will go wrong for this pregnancy - but I am human, and of course I worry... I try to minimise the worry and my partner tells me off everytime I am stressed or worried - sometimes I don't have to say or do anything, he just knows whcih is very annoying!

    We haven't told his kids yet, it's tricky as ideally we would like to hold off people getting excited or nervous around us, until the 16 week scan - but I had a pretty big bump, and a big baby - so I am not sure how I will hide it as I am showing already, friends, family and work colleagues will all figure it out soon and that will be an added stress... my partner says wait for the 12 week scan, assess my bump, and we'll deal with it then - basically, no plans and go with the flow, stress-free.

    I know he has valid points but I can't help but have this all in my head! I am so nervous/escited/scared/anxious/happy - just mixed emotions...

    I'd like to know what happened with your pregnancy tinkabell41, I don't know if 2 years down the line you will receive this, or if you have a gorgeous little toddler running around causing mayhem! I would love to hear form you and share your experiences since the sad similar experience you had seemingly so similar to mine. I think about Ethan every day and have moments when I'm alone that I have a little cry - I imagine this will never go away and will always be the case, as I am sure it must be for you too.

    I hope you and your family are all very well and best wishes for you all for the future. xx

  • Dear mum2b3, I could not leave this page without replying as your described situation was identical to mine, having this horrific nightmare to go through the medical termination at 23 weeks in July after discovering that my baby had severe spina bifida with lots of complications, I was in a complete turmoil and still trying to get over and move on and try for a new baby but very anxious and scared that situation will repeat itself... Therefore I urge you to stay in touch with me and share your experience and outcome as you are possibly now over 20weeks pregnant and went through similar fears as me? And I wish that everything goes well for you and you will deliver a healthy baby in term!

  • Hi Mum2b3 & Yulianna, I experienced the same horrific nightmare, we lost our baby boy at 20 weeks due to severe spina bifida and other complications. i as well am trying to move forward and trying for another baby, but I find myself completely scared. Like Yulianna said, Mum2b3 please keep sharing your story with us , I hope you are having a very heathy pregnancy and wish you the best!

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