I have been told that I am at a high risk for spina bifida at 2.81. Someone please tell me it is not as scary as it sounds!

[twinklingfairy]

Help
Bit frightened by it all.
I am seeing the consultant tommorrow and will be sent for a detailed scan sometime in the next week, I will find out when tommorrow.
I am just looking for good news and stories so that I can stop feeling a bit frightened by it all.
I am trying to stay positive and am doing not too bad, but real life stories from women who know what it is all about would really help.

Coming to offer my support...I went through a very traumatice PG with DC1 as was diagnosed with a condition called PUV (at 20 weeks) First thing we did was google...BIG MISTAKE was all gloom and doom and very very upsetting for us and hard for us to accept. However, our consultant was fanastic, told us of for googling and reassured us all the way through with regular scans and follow ups. DC had to have an op at 3 days old, went onto medication and had a kidney removal last year but is totally fine. I guess what I am trying to say is that until you have a definate diagnosis (or not as we are hoping) then please please try not to panic. I understand how you are feeling right now but you sould you have a great support network around you. Thinking of you and yours

DM x

Thanks Dozy

Anyone else??

Hi - I was born with spina bifida and am fine now, still have a tiny hole/ dimple right at the bottom of my back/top of my bum crack. Lovely dh calls it my "2nd bum hole" It doesn't affect me at all.

I didn't have antenatal testing for it in pregnancy (chose not to). DD was born with spina bifida occulta and has never needed treatment. We were a little bit worried when she was a toddler as there is a chance that it can affect continence and she took a very long term to toilet train. But we got there.

One of the children on "Child Of Our Time" was born with spina bifida and needed surgery. Can't rememeber which one but I know she's running about no problem when I see the programme now.

Good luck for tomorrow.

Hiya twinklingfairy

I was given a 1 in 13 chance of spina bifida (I can't remmember the figure now, but I think it was about the same ball-park as yours - it's multiples of the mean for maternal blood alpha feto-protein isn't it?). It was a very scary time and I remember it seeming so bleak waiting over Christmas for the scan.

In my case they couldn't find anything wrong on the detailled anomaly scan so I had a series of repeat scans throughout the pg and they still coudn't find anything although they came up with new scary things that could be wrong on a regular basis for the rest of the pregnancy. I chose a home birth (against advice) and DS is now a wonderful, very good-looking, funny, bright two year old. He is partially sighted and I think this is what caused the raised AFP result in our case - I've since met a few other parents who've had babies with eye conditions who've had this same test result. But it's not a common reason for a raised AFP.

My understanding is that there are a lot of different situations that can cause a raised AFP, including spina bifida, but also quite a lot of other things, including the fact that some women seem to have naturally high levels in every pregnancy without there being any problems with their babies. It's also possible to have high AFP levels with problems with your placenta, so sometimes detecting them means that it can be monitored carefully. Women from some eithnic groups have naturally higer levels than average and if you're further along in the pg than they think, or carrying twins, that would increase the level.

Things turned out very well for us anyway. I really hope it goes well for you and you're not waiting long for this scan.

O thank you. I was hoping to hear things like that.
I am ust going to go and sit in denial for a bit I can't understand why I am in this catgory. I have just turned 30, so am not an older mum, don't have any weight issues or smoke or really drink. I don't have diabetes. I feel that I simply shouldn't be here, going through this.
I wondered too, if I had taken the test with DD, would I have gone through this with her and she is perfect.

Oh poor you crimplene having to wait over christmas. What a scary thought though that they may come up with more and more to frighten me.
I have been through so much already.

I wonder, but doubt, that losing a twin at 6 weeks may have affected this result? I am now 18 weeks. I guess that's probably clutching at straws though

Yes, bleeding and certainly losing a twin will increase the level of AFP - although I don't know how long after the m/c it would still be higher - if the m/c was somehow incomplete or had left some oddities to the placenta it sound very plausible that it could do this without it being sinister - you should certainly mention it. I had quite a bit of bleeding but it had all stopped about a month before they took the blood test. I don't think you're clutching at straws at all, it sounds relevant.

What I was trying to say is that after this result they're never tell you 'It's all OK, don't worry' even if the scan result is OK and even though it's all you really want to hear. If they can't find anything odd on the scan there are just so many possiblities they have to check for - I found it very wearing always having the sense that they think something is wrong, but they don't know what, through the rest of the pg. It doesn't mean that they've found anything else, but this test result is unusual and it doesn't produce huge numbers of false positives (unlike some other screening tests) so they can't ever give you a proper 'all clear' afterwards. I found that stressful.

Basically a raised AFP means that higher levels of this type of protein (made by the baby) are getting into your bloodstream than would be usual for a singleton pg at your dates. Some of the reasons are benign, minor or easily fixed, some are more worrying.

The reasons why it could happen are that the baby is producing more AFP than usual perhaps for no obvious reason, perhaps becasue of something fairly minor like my DS's eye problem or there's a 'leak' somewhere in your baby's body (neural tube or abdominal wall defects) letting out more AFP than usual or that there's extra AFP being produced an older / extra baby than they think is there or that the usual amount is being produced but more is leaking through the placenta than usual - as happens often during a m/c or just that your placenta is working in a weird way. A lot of possiblities.

Age wouldn't affect this one (it's not like chromosomal abnormalities) - and other than the link between taking folic acid and preventing NTDs I think this sort of blood test result is just one of those random things; it can happen to anyone however healthy.

Have you got a scan date yet?

I forgot to ask about the twin theor.
As soon as DH and I sat down at the consultant appointment he sdi that he woudl not be overly woried by a 2.81 result, 5, 6 or 7 yes, but not 2.81.
We were immediately releaved and reassured.

We are going to be sent to the bigger hospital 100 miles south, for a diagnostic scan, by a consultant who is specialist in looking for all things spina bifida.

We also were sent through to the local hospital for a scan, where the woman is highly thought of. In fact the consultant implied that she was evey bit as good as teh woman south, but that we had to be sent to her anyway.

We then spent nearly an hour, well at least well over half an hour, being scanned and the woman was a thorough as she could be.
She was able to tell us that she could see skin covering the whole spine, up to the base of the neck. Baby had a full tummy and bladder, so she was happy on both counts that things were working well. She checked the cerebellum and was happy that it was the perfect size, also saying that the skull was also the right size for my dates.
She said that if there was an problems then they would normally be reflected in the skull being smaller or the cerebellum.

The only problem was that baby decided to keep curled up, chin to chest, so she was not able to check the base of the spine.
She said she would have loved to have sent me away saying not to worry but that she had to be honest and, having been unable to check that final point, she couldn't be totally sure.

The lady down south will be able to see the spine from all sides and give me much more information, the only prob is that it will be best to leave it until nerly 20weeks and we are only just 18. So a horrid wait for us, but at least we were reessured by teh local sonographer.

I just thought I would bring you up to speed and thank you for your kind words

That sounds very promising. Hope the next 2 weeks go quickly.

twinklingfairy - that's wonderful news that sounds very reassuring to me. It sounds as though spina bifida is very unlikely and they've ceartainly elimated the more severe forms; the lower down the spine any opening is, the fewer problems it generally causes. They've also been able to eliminate serious abdominal wall defects which is the other thing they would have been especially concerned about. I'd relax if it were me (easy to say with hindsight I know!).