Help! Above average AFP result, 18wk scan & now at risk of cystic fibrosis, CMV or problem chromosomes or failing Placenta!

[Flumpytigger]

Can anyone please help me!?
I am 18 weeks pregnant and I received a call from a midwife on Wednesday morning to tell me that my AFP blood test has come back as higher than average and that I needed to go into have a scan the next morning at 10.30am with a doctor to check for Spina Bifida.
My husband and I went in absolutely terrified of what the outcome may be and praying that all would be well. Only to be told that Spina Bifida isn't likely at all; but that the babies bowel is particularly brighter on the scan and this therefore indicates the risk of an infection. We have had Cystic Fibrosis and CMV thrown at us and I have had a blood test for both and my husband has had a test for cystic fibrosis.
Then the doctor also told us that the baby looks to be the size of a 16 week old baby and not an 18 week old and that there is very little amniotic fluid! She checked the 12 week scan sizes to see if my dates were wrong but decided that this was unlikely. She therefore thinks that there could be a problem with the placenta not functioning properly or a chromosome issue!?
We have been booked in for another scan to check the size of the baby again on 28th December and we will receive our blood test results then. It has also been suggested that we consider having an amnio then too, to rule out a chromosome issue.
We just feel absolutely gutted and we're not sure of how to deal with this for the next 2 weeks. I'm feeling like it's something I've done wrong and I'm also feeling like we're being told that our first baby is just not meant to be.
Can anyone help? Has anyone had the same or similar experiences, I would love to hear from you?
Thanks!

no experience of this, but will bump for oyu, and hopefully someone will be along who can help.

BUT - you have done nothing wrong at all...nothing at all..whatever will be, will be and it is no-one;s fault...please do not think that.......the next 2 weeks will be difficult, waiting always is......very worrying, i am sure you will get support here though......

.

I'm very sorry you're going through this, particularly at this time of year.

I haven't really got anything to add to what lulumama said, she is absolutely right - this is NOT your fault!!!

I know what it is like to have lots of scan and lots of worrying during the pregnancy. As I write this, my lovely baby boy is asleep on my lap, and it was all worth it.

I hope very much that it will be the same for you. Fingers crossed XXX

Hi flumpytigger

We were going through this last Christmas. We got a letter on xmas eve telling us that, due to raised AFP there was a 1/13 chance of spina bifida and to come in for a scan on the 28th. Arrgh. We had a very very stressful holiday and went through all the same thoughts about blaming ourselves.

There are a couple of things that spring to mind.

I'm pretty convinced that our raised AFP result was a result of the dating scan being wrong - I don't think the measurements were wrong, but they seem to be less accurate than they're supposed to be (the baby was actually further along, and therefore producing more AFP than it was supposed to). I know someone who had IVF so she know exactly when she conceived and was told the baby was due ten days sooner. How sure are you of the dates?

Once they've found a raised AFP they'll never tell you that everything is OK, because there are always things that could be a problem, and they'll try to give you as much information as possible, by running more and more tests. Our scans were negative for spina bifida, but they kept thinking of other things to test for, just to keep us stressed.

Up until the day DS was born they were telling me about placental insufficiency and IUGR etc etc. He was born at home - none of the things that the raised AFP might have lead to happened, however, DS does have congenital cataracts and therefore dodgy eyesight, which they couldn't have detected before birth. So even when they do say that the tests haven't shown any problems, it never means that there are no problems.

I would only go for an amnio in your situation with a lot more info about what they're looking for and why, because in the case of raised AFP there's a 10% chance of m/c. M/c rate with amnios also varies with how experienced the person doing it is, so if you do go for one, you want the best possible person to do it.

Are you being seen by a big teaching hospital?

Hi flumpytigger. I am 23 weeks and just been through a similar rollercoaster. We had a bowel problem identified on 20 week scan and at frist they thought it was "echogenic bowel" so have had a battery of blood tests including CMV and cystic fibrosis and were about to have an amnio when they decided it was more likely to be a dilated bowel loop, possibly a bowel obstruction or perforation.

We're having another scan at 28 weeks then being referred to the paediatric surgeons.

It has been bloody stressful & we are left facing weeks of uncertainty, may not know exactly what is wrong until baby is born.

If it would help to chat to someone in a similar boat please feel free to CAT me. xxx

Flumpytigger

your post has inspired me to do some more digging. Nobody mentioned cmv to us, so perhaps that's the cause of ds's cataracts? It's easy for me to say now, but i'm so glad they didn't identify it- or the cataracts, it seems they can see then on scan but they failed to spot ds's - as we would have terminated had we had a diagnosis like that (we discussed it at the time)

What i should also have said is that the only thing that helped us get through the waiting was just taking it a day at a time. there's an organisation called arc (antenatal results and choices) who may be able to help, but i'd contact them now as they're shut for ages over xmas. And talk to your midwife if she's human (mine refused to talk to me when I couldn't stop crying 'cos she 'didn't know anything about it'), there should also be a specialist midwife at the hospital who is trained to help with all this stuff - but she was away for a nice long holiday over chirstmas in my case.

I really hope that thing turn out as well for you as they did for us. I'll be thinking of you.

Hi Everyone,

Your messages have all really helped me, thank you!

I'm new to the forum so even just looking around in different threads has also helped.

I also haven't felt the baba (aka flump) move at all yet and I'm nearly 19 weeks and I also don't feel as though I have got a bump. I think I just look like I've eaten too many pies and have a pot belly! So it has really helped to read other womens expereinces and it's reassuring to know that we're not alone.

Over the past few days my hunger has seriously increased, I've started putting on a bit of weight and feeling aches and pains in my tummy etc - so hopefully these are all good signs that flump is doing what he should be.

I definately feel let down by the doctor in that I feel as though she went into the scan with the intention of finding a problem. Everything about her just seemed to make me feel stressed, nervous and tense and I'm worried that I will feel this way everytime I go near the hospital for my next appointment. This also doesn't prepare me well for if and when I go into labour. The thought of going into that hospital makes me anxious!

In answer to Crimplene; the doctor asked if a student doctor could sit in, and so this may be made the doctor more particular? But it's Hope hospital in Salford and is supposed to be one of the best for antenatal care.
Also CMV is apparently only a risk to your baby if you catch it while you are pregnant, although how they can tell that I don't know! I have done a bit of reading myself on the virus and apparently a lot of people will have the virus without even knowing it!

CMV should definately be something treated the same as Toxiplasmosis in that all pregnant women should be given the information on this virus as soon as the midwife visits them for the first time. At the end of the day it is a virus that, if caught during in pregnany, can harm the baby! I also know now that CF is only a risk if we are both carriers of the gene and that a Placenta problem can be helped up until the baby is well enough and strong enough to live outside the womb.
In addition the size of the baby isn't that worrying either, as they could have easily got the measurements wrong or flump could be a slow grower and suddenly have a growth spurt!

After reading all of your messages of support and your experiences I definately think that we will just have to wait and see what 28th December brings us and keep everything crossed that our little flumpy is ok.

xxxx

Will be keeping my fingers crossed for your scan, Flumpy. Hope you manage to enjoy Christmas, you sound pretty positive !! Just to warn you the CF results might take AGES - ours went off 3 weeks ago and still no word.

xxx

Flumpytigger

That's what I meant about they never tell you everything is OK after a raised AFP result, you're right, all they do is think of more problems as they really understand it to be a sign that something's wrong...if they can't find one thing, it must be something else. I'm glad you're being seem somewhere good, but even then they have the not-so-good doctors so perhaps you got one of them.

I felt like you did about the idea that I must have done something wrong (sounds like you're thinking that about maybe catching CMV -actually so am I, now you've linked the two in my mind). But if I've understood it right, most babies with cmv are asympomatic and most of the more severe stuff like weird shaped heads, they would have been able to see on your scan already, although there are some other prtential problems I know, but you can definitely have raised AFP when there's nothing wrong, there are some women who have high levels with every pregnancy - and it's likely to be higher anyway if you're non- white.

I was talking to someone from the National Blind Children's Society yesterday and she said that lots of women whose babies have congenital cataracts and glaucoma have raised AFP results, but there's been no scientific research - so I'm starting to think all sort of thoughts about trying to get the research done to find out if they're caused by cmv, a bit like you wanting everyone warned about cmv, I want to do something. But perhaps if we succeed we'd just give everyone else something to worry about when it obviously isn't a very common problem. Whilst I hope your LO is absolutely fine, having a kid with slightly iffy eyesight (and rather sweet stars in his eyes) pales into insgnificance next to all the things they talk about while they're running tests.

They made me have scans every four weeks and dopplers to check that the blood flow was OK. The growth scans become more and more inaccurate as you go along, the normal error range is + or - 20%. DS used to grow in very dramatic spurts.

I'm a terrible patient, and I felt the same as you about all the medical stuff so I went for all the scans. I used to get high blood pressure just walking into the hospital (it was fine at home). But as things were going OK and I looked into the situation more I arranged a home birth (with an independent midwife as you get classified as 'high risk' with raised AFP, whatever the tests don't show, and I wanted someone supportive there)and when the last scan came back OK, I transferred to her care and had a fantastic birth at home.

Sorry about the ramble. Let us know how it's going. I'm so glad you're feeling a bit better.

Hello everyone,

Thanks Crimplene & everyone for your kind words and support.

An update:

I've now been back in again for the 20 week scan mainly because the consultant was concerned that the baby is the size of a 16 week baby even though I was 18 weeks.

At the 20 week scan the baby had grown but is still small for it's age, but the consultant has also noted that I have oligohydramnios and notching on my uterine artery that is reducing the blood flow. She has made another scan appointment on 11th Jan. The CF test came back negative (just as we thought) and there is no news regards the CMV test yet! However the consultant seems to have completely ruled this out now or forgotten about it anyway! It seems as though CMV is even more uncommon than first thought Crimplene! She didn't even mention the bright bowel on this scan! We would be more than happy to make a decision about our baby if we felt that we had all of the facts and relevant information; but I'm finding it increasingly hard to feel confident in the information given to us! The way I feel right now; I just want to hold our baby in my arms

I ended up having an amnio while I was in for the scan to rule out a chromosomal disorder (Downs has now been ruled out and the other disorders will hopefully be ruled out on 11th Jan). It is looking more likely to be that the placenta isn't functioning as well as it should be because of the uterine artery notching.

I am currently 20 weeks and 5 days and I feel thoroughly worried and stressed! The consultant has been really unhelpful again and when I asked if there is anything they can do if it is placental, she just said 'no' and didn't give me any advise or info! I just cried before the amnio, after the amnio, on our way home and practically ever since. I feel so alone and un-informed. I haven't even spoken to my own midwife about it. I've also felt so tired and rundown this past week; which worries me even more.

I am just praying that this little one hangs on and needless to say Christmas and New Year has been a subdued affair because of all the unknowns . I feel like I can't plan for anything as I might become too attached. The nursery is still full of junk, the pram shopping has gone on hold indefinately and I'm even starting to worry about it getting to a point where I have to have a C-section really early on because of the placenta and the artery notching and us not having anything ready for the baby; how will we cope!?

Urgh I feel so down about it all. We haven't been able to enjoy our first pregnancy and I'm so worried about our baby.. it also doesn't help when everyone around us are having perfectly healthy pregnancys and babies I'm happy for them all because they are my loved ones, but I can't help the part of me that's asking - why me?

(((hugs)))

My first baby had lots of abnormalities and I did terminate the pregnancy That being said, most of the time these tests rule out what is suspected to be wrong rather than confirm it.

I really do feel for you, I can remember feeling the way you do You are probably feeling run down because of all the stressing, try and eat well and take your pregnancy vitamins.

Good luck and take care.

hi flumpy

so, you have some better news, and some not so good news..but no reassurance from the consultant

re things for the baby..you will be amazed how much friends and family will rally round and sort things out for you if baby comes early..

you concentrate on yourself and baby...

this website might have some useful info or links to further support

Flumpy, I'm sorry things still seem so uncertain and what a pity your consultant wasn't more helpful. At least knowing that the baby is small etc means that the pregnancy should be well monitored from now on but I know how you feel about the uncertainty and not being able to enjoy the pregnancy .

It might be worth writing down a list of questions that you'd like answered to take in with you next time as otherwise you can feel shunted in and out without finding out what you want to know IYKWIM.

GoodKing I'm so sorry to hear about your baby and hugs right back to you.

Thank you for all of your kind words and encouragement, it really is a rollercoaster of emotions at the moment!

Thanks for the website Lulu, it will come in very handy and I definately think that I will write some questions down in preparation for my next scan, thanks Liath.

The worst part is defiantely the not knowing and the waiting; it's so difficult. I have read so much on the internet again and I know that there is plenty that can be done to help. I just wish my consultant would give me this hope instead of such grim news all the time! It's quite ironic that the hospital is actually called 'Hope'!

Just out of interest, does anyone knowing anything about Pregnacare vitamins and can anyone recommend them? I was just wondering if they may help the LO & pep me up abit?

Thanks again and I'll keep you all posted..