Long Post - Spina Bifida found

MummaBear16

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Hello..

On Friday I found out my little boy has spina bifda. I went in expecting to just find out if my suspicons were right about him being a boy, and see how big he had grown. Literally as soon as the wand hit my belly the us tech announced he is definitely a boy!

I was very happy! The scan was expected to take 45 mins. Nearly the whole time I was waiting to see a nice clear side profile of my baby boy, but the scan never got to that. One hour had gone by, and all we had seen was his brain and spine. I didn't think anything of it, as the tech kept saying she needed him to flip around for a better view. An hour and a half went by... and the tech left the room for about 15 minutes. The whole time she was gone I was walking around trying to get baby to flip over..

She finally came back and apologised for taking so long, I was still unaware and then she said I won't be needing the gel on my tummy and could wipe it off. I was surprised, as the scan was not yet finished in my mind. She then said she is so sorry to be the bearer of bad news, but it looks like he has spina bifida.

I looked at her and smiled awkwardly and said OK. The she walked us down to the pregnancy assessment center and we waited to speak to doctors. Waiting in there behind a curtain, I busrt into tears :( What the hell just happened... what does this all mean! My OH rang up work and advised he wouldn't be going in that night.

The doctors said on the scan it is pretty obvious. I won't know any more until Wednesday when I am meeting with all of the high risk team at the hospital.

I have no idea what to expect. I am fairly sure it isn't the mildest form of spina bifda, since they said they can see the fluid buldging through the spine break.

I've just cried and cried :( I have had everyone ringing and messaging asking for the news of a boy or girl, and it's been so hard. I have only told close family and a friend. I feel so stressed my stomach hurts :( I have another scan on Monday morning so the hospital can review for Wednesday. I just don't know what to do, or think. I'm not even sure of the point of my post... just needed to get ot all written down and off my chest. I keep waking up hoping it was all a bad dream, but then it's all still real :(

Thanks for reading if you got this far.. it would be lovely to hear from anyone who has gone or is going through this. I don't know anyone who has, and it feels incredibly lonely like no one could possibly know.
 
:cry:
i'm so very sorry i can't imagine what you guys are going through....
hugs**
 
Oh gosh. I'm so sorry to hear :( I know there are specialists who operate on spins bifida while in utero still. Obviously risky. There is also a girl at my son's school who was born with spins bifida and she had surgery and is fairly normal and does all the activities of other children. The the specialists will have more info for you and what to expect, etc. hopefully it's just a mild form. I'm so sorry :(
 
So sorry to hear *hugs* couldn't imagine how you must be feeling. Please keep us updated, sending hugs and prayers/good vibes your way.
 
i can't imagine how you feel. I'm wishing the best for you and your family. As the PP said please keep us updated
 
I'm so sorry for your bad news. I can't imagine how it feels but if you need to talk or support we are all here for you.
 
Thanks so much everyone. I will keep you all updated.

I've been sitting down most of the day and stiIl having slight stomach pains, I am guessing from the stress. I've been having some tightenings and period like cramps in my back. I think it's just braxton hicks. Will be keeping an eye on it though.

My scan is in the morning, and my mil is coming along as my OH will have just finished night shift and we don't know how long it will take. I'm pretty nervous.

I keep wondering why this has happened... Even though I know there is no real reason. I religiously took folic acid, I never had a hot bath or spa.. it's just so random :(
 
So sorry sweet, i have no personal experience of this but have a friend whose husband has a mild form of it and he leads a very normal life, they have a son who obviously could have had it too, but didn't. I also remember a girl at school having it and she just walked with a limp.
Hope everything goes OK and it's not as severe as you're thinking it might be.
 
Oh god I'm so sorry to hear you are going through this :hugs:
 
I'm so sorry you are going through this, you are in my thoughts :hugs:
 
I'm so sorry! I hope you get some clearer answers on Wednesday.

Thinking of you & sending positive thoughts x
 
I'm sorry to read this Hun. I hope u get a clearer picture tomorrow after ur scan. Will be thinking about u xx

Congratulations on ur lovely boy xx
 
I don't have any personal experience of this but wanted to send huge hugs. Stay strong and I hope the doctors can help answer your questions and advise you.

x
 
I am so very sorry. I hope and pray your baby has a mild form of it. Can never understand why. Please know many thoughts are with you and sending you positive vibes, wishes and prayers for your next appointment. Take good care.
 
So sorry for what you are going through. My sister has spina bifida but it is very mild. She walks normally. I hope your scan goes as well as possible. Hugs
 
Thank you so much everyone, it really does mean a lot. It's nice to have a place to come to and let it all out, especially when I don't feel to tell many people I know. It's a strange place to be at... I usually tell people a lot and am quite open.. but this has just made my heart sink because of the unknown.
 
So sorry for what you are going through. My sister has spina bifida but it is very mild. She walks normally. I hope your scan goes as well as possible. Hugs

Thank you so much, that's very encouraging to hear.
 
Just wanted to reply and say we're in a similar limbo situation - not SB but have been told our Nuchal fold is 4.2mm and raised. Have been referred to fetal medicine and I am awaiting specialist input. No idea if baby is structurally ok or not - just have to wait. We were given a card to contact ARC (UK organisation) but they have a website with lots of links to other organisations that give information regarding specific conditions. https://www.arc-uk.org/for-parents/links

I understand what it's like to be in limbo - lots of love
x
 
:hugs: I'm so sorry your going through this.
 
Mumma, I'm so so sorry you are going through this. I have no personal insights to share but just wanted to send you :hugs:
 

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