Suspected Spina Bifida at NT scan

[sophie8080]

Hi,

Went for our NT 12 week scan yesterday and the sonographer said she couldn't measure the back of the baby's brain/ brain stem area properly so she got the consultant who looked and said whilst she couldn't see 100% she suspected Spina Bifida. I now have to wait 2 weeks to go back for another scan to see everything more clearly which feels like torture. Looking online (which i know i probably shouldn't) there are not many examples of SB being picked up at this scan it is more common at the 18-20 week one. Has anyone else had this happen? This was at the fetal medicine research centre at kings.

I am also feeling incredible guilty as I had an ectopic pregnancy treated with Methotrexate in April and whilst I waited the required 3 months to start trying and took folic acid the consultant said if it is SB it is likely to have been caused by the drug (it takes away all the bodies supply of folic acid) and it leaves me feeling like I have poisoned this baby and I am sure there were some days I forgot to take the folic acid as we were on holiday at the time.

Keen to hear if anyone else has had a similar experience and what the outcome was. Many thanks.

[KittyandTeal]

I have no experience of sb but I know how horrid the wait for results and extra scans are.

All I can say is that you didn't mean for this to happen. There is nothing you could have done to prevent it, lots of people take no folic acid and go on to have perfectly healthy babies.

Please think about contacting ARC for support. They are very well informed and will be able to be someone knowledgable to talk through it all with you.

I'm sorry you're in this situation

[sophie8080]

Thank you for your message kittyandteal, it's nice to hear from other people who understand the weird waiting game and all the emotions it brings. I had a similar situation when I had my son a few years ago in that he had a soft marker for downs at his 12 week and 20 week scans so we decided to have an amnio which was clear, but it's strange as this time the wait seems different. Maybe because the consultant seemed more concerned and serious this time but then I may just be going over and over it in my head too much.

I did speak to a very helpful lady from arc yesterday so thanks for suggesting that.

Thanks.

[KittyandTeal]

I'm glad you called them and they were helpful.

It is such a strange bubble to live in while you wait. I felt like my life was just on pause, my thinking was utterly absorbed with the questions and worries. We had such bad news but the waiting time (it was only 4 days for us) is up there as one of the hardest parts of what happened.

[miwelaisjacydo]

Haven't had any experience of this but have a dn who has spina biffida am happy to answer any questions.

[ShinyBadger]

Sorry to hear this, just out of interest how many weeks were you when you went for your scan?

[Wikkitikki]

I'm really sorry you are going through this and have to wait for a scan. Please don't blame yourself about the Folic acid, my GP once said there would be an epidemic of SB in third world countries if it was purely caused by a lack of folic acid.
I'm not even sure if the stats have improved since the folic acid campaign was introduced back in the 90s.

[Wikkitikki]

Just wanted to add when I was under the fetal care unit back in 2003 & 2005 I had anomaly scans at 16 weeks to have a detailed look at the spine.

[sophie8080]

Thanks, to update I was 12 weeks at the first scan and just had a second scan at 14.5 weeks where spina bifida and severe hydrocephaly has been confirmed. We have been advised to terminate and are just trying to come to a decision ourselves. Horrible news but I think the waiting was even harder. Thanks again for your messages

[Wikkitikki]

Sophie,
I was in your shoes 17 years ago. I'm so very sorry that you have to make this decision. You will get invaluable support from arc, they have befrienders you can chat to who have been through it. PM me if you like xx

[princesspuds]

Sophie, I was told exactly the same thing at a scan at 16 weeks, I was informed the baby would survive the pregnancy, the hydro is linked to the sb and is a marker by the cerebellum in the brain being like a banana and the head shaped like a lemon.

I continued with my pregnancy and now have a 12 year old dd who is amazing, she has had numerous operations though 23 in total for various conditions associated with sb.

Shine is very good and could probably arrange for someone for you to speak to about it.

[franincisco]

Sorry to hear your news Sophie but just wanted to share my friend's experience with a child with spina bifida. At her 20 week scan she was told he had type 3 SB (sorry can't remember the proper term, but the most severe form of SB) severe hydrocephalus and severe talipes. She was strongly advised to terminate and told that the baby would have a very poor quality of life.

She went ahead and he is now a strapping 12 year old who has a great quality of life. He is a wheelchair user but plays tennis and basketball at a competitive level, is bilingual (parents from differing countries) and can swim much better than most people. His health has generally been very good, after spending one month in hospital after birth he has only been in hospital once after his shunt got blocked.

I would definitely contact SHINE, sadly info that is given at diagnosis tends to be worst case scenario and not balanced at all. I know from sporting events that my friend's son goes to that there are many children with SB who enjoy great lives.