'Strong suspiscion' of Spina Bifida at 12w scan - advice needed.

[Mamzelle7]

I can't really believe I am finding myself here and typing these words.

We had our 12w scan on Monday, 2 days ago. The sonographers were very silent throughout the scan and said everything was difficult to measure, but couldn't agree on whether it was because the baby was in a bad position or because s/he was moving too much. We were told to wait outside for the results of the combined test and at that stage, were still blissfully happy about there being a bouncy baby. We even joked about the grumpy sonographer! She came back eventually to tell us that, as she hadn't been able to take the measurements properly because of baby moving, we needed to be seen by one of the consultants. We should have had alarm bells going off, but even though she clearly knew something was wrong, she didn't show it.

After the consultant scanned me (vaginal scan this time as he still couldn't get what he wanted) and kept mumbling about it being a 'difficult baby', he asked his assistant to take us to a quiet room. That's when the alarm bells went off. The following 10 minutes in that 'quiet room' were horrendous. The senior consultant eventually came in and told us they had identified issues in the brain and couldn't rule out Spina Bifida. We have to come for a re-scan in 2 weeks so they can count the vertebrae and confirm it or rule it out.

After doing lots of google-research, it seems that the outcome will be bad whatever happens in 2 weeks. They identified the issue in the brain immediately and that is not going away. I guess the scan will just help to give the baby's 'condition' a name.

We are obviously devastated. We had approached the whole thing with such naivety; I only ever thought about the risks of mc or mmc, never of a poorly baby.

Has anyone had a similar experience followed by good news? Should we ask for an earlier re-scan? Is it selfish to already be thinking of terminating this pregnancy because we can't see ourselves raising a disabled child?

Any advice would be immensely appreciated.

[Fragglewump]

Op so sorry you are going through this. I can only suggest taking time to digest the information and ask lots of questions. My friend was told her baby had hydrocephalus but he is a very spirited 13 year old now. There are no straightforward answers sadly. Hope you and your dp can be a strength to each other.

[Stargirl7]

Mazelle7 am sorry to hear you're going through this. Is there anyway you can afford a private scan and perhaps get a more detailed look? Or can you have an amnio? Cvs doesn't test for Spina Bifida I don't think.
Nothing is definitive yet, so digest the information as best you can at this point and get questions ready. When we had a bad 20 week scan I completely forgot all the questions I wanted to ask because my mind was so fogged up with fear.
Look after each other. x

[Mamzelle7]

Thank you both. Thankfully, dh and I are getting closer because of this rather than distant and it is also making me appreciate our wonderful 2 year old dd even more, with a new perspective.

I keep hearing about these miracle stories of follow-up scans giving the all-clear, but I am not too hopeful. I just hope they can give us very clear answers and that it won't be a very vague kind of 'child might have this and might have that but might also be totally fine' , because I just don't know what we would do....!

What questions should I ask? and Stargirl , did you get better news after your scary scan?

[Stargirl7]

We had a cleft lip diagnosis but along with another niggle (short femurs) they recommended amnio. Luckily this was all clear, but like you the guessing and stressing brought my partner and I even closer. It is our first child too. We were told it was 0.1% chance of having cleft if nothing in the family. It's just 'one of those things'.
Unfortunately, we have had a lot of 'it might be...' etc. The only way to know is to have definitive testing, not just screening (e.g. amnio not just 2d scanning) Make sure you get what's best for you.

I'm under a consultant now for growth scans but we thank the lord every day that we got through that time mainly in one piece. You will too.

Be strong. Keep us updated. x

[weatherall]

Can you get a private scan sooner than that?

I know I wouldn't want to wait 2 weeks.

Also if you are thinking of terminating (don't feel bad, most patents do) then surely they should be hurraying things so it's a less traumatic procedure?

[Stargirl7]

I agree with weatherall though, can you get a private scan asap?

[ElizabethMedora]

Sorry to hear this OP. I've heard the organisation ARC recommended before //www.arc-uk.org/ perhaps they might have support to offer?

I don't know & this is just a guess but is it possible you have to wait 2 weeks so the baby is bigger & a clearer diagnosis can be made?

[Mamzelle7]

Thank you all for your response. I too have heard of ARC - been in denial so far and not contacted them but think I will tomorrow. I guess they will be able to advise on exactly what questions to ask and whether or not it is worth asking for an earlier appointment.

The reason they gave for leaving it two weeks was indeed so that the baby is bigger. They couldn't count all the vertebrae as it was still too small (12 weeks exactly). It seems so cruel to let me continue to grow a baby potentially only to get confirmation of how poorly s/he is...

[Mamzelle7]

Also - we debated paying for a private scan earlier but the hospital where we are being seen is renowned and amazing; there is little guarantee we would get equally good care elsewhere, unless maybe at the Fetal Medicine Centre, if seen by Pr. Nicolaides who is incredibly renowned, but we might do that after our appointment in 2 weeks.

Stargirl I am so pleased to hear that your outcome was positive in the end - it gives me hope, even though I am not really allowing myself to have any...

[buggerboooo]

Oh im so sorry op. Like you I have just had 12 week scan and was bery worried about mc or mmc but the possibilities you are facing never even enteredy head

I do hope you get all the answers you need. X

[princesspuds]

Mamzelle, I have a 10 year old dd with SB, if you have any questions please don't hesitate to ask and I will answer as many questions as I can for you, this is my daughter

[callipygian00]

Hi Mamzelle, hope you are ok. My friend has a 4 yr old DS with spina bifida - he is such a happy and friendly boy. He is loving life and so are the rest of the family. There are challenges the family have to deal with that most families wouldn't think about, but I also have a higher chance of having children with SB and seeing my friend's family so happy makes me less scared about this. Sending best wishes.

[DRSLondon]

We terminated in February due to spina bifida being diagnosed at our 20 week scan. It is beyond devastating. I am so sorry you are in this position. I made the decision straight away as I felt the pain and suffering we felt was better than watching our child face a lifetime of it. You just have to do what is best for you. I am at peace with the decision but still heartbroken.
I just got pregnant again and I am scared. Will be until 20 weeks as the risks are higher.
It doesn't seem like it now but it will be okay and you will get through it. The pain and grief is all consuming though.
If you want to talk more I'm happy to. You can reach me on my blog too. //Www.wakeupsurvivesleep.com
All the best xxx

[TheEternalForever]

I think the reason they told you to come back in 2 weeks is because the baby will be bigger/more developed and so they will be able to see what's wrong (or if everything is, hopefully, okay) so even if you go private before this 2 weeks, they probably won't be able to tell you anything and you'll end up wasting your money. Better to try and get your head around things these 2 weeks, do some research, write down any questions you have and anything you want explaining/clearing up so you dont forget in the heat of the moment and then see what happens. I so hope it's good news for you! :)