Amniotic Band Syndrome

[leesey]

So much for this pregnancy being less complicated than the last one...

Anyone heard of Amniotic Band Syndrome? We found out today at the 20 week scan that I have an amniotic band, a stretch of tissue joining one side of the amniotic sac to the other, posing a risk to baby (who is otherwise perfectly healthy, thank goodness). At best deformities can include scarring on face and body, at worst it can cause amputation of limbs and obviously fetal death due to blood restriction/ strangulation but I don't even want to think of that.

I'm avoiding the google machine, it's not worth the heartache, but just wondering if anyone has any real life experience of it?

I need to wait 2 weeks to see consultant xx

 

[Capricorn]

I'd never heard of it so I had a quick google and found a website dedicated to it.
I think mainly you've covered the main points in your post about the risks etc as that website has anecdotes from families who have had this throughout their pregnancy..
It's good that she looks healthy so far - got to be a good sign..

It can also happen to anybody & isn't likely to happen again with later pregnancies. Hope the consultant can give you more of an insight in two weeks xxx

 

[leesey]

Thanks, could you give me a link? I'm too scared to go clicking on random things in case I get too many horror stories that I feel like there's no hope. I'm already aware of the worst, I'd just rather having some positive things to focus on xx

 

[Hoping for no2]

I know someone who had this but it was actually an ambiotic sheet not a band which is harmless to the baby and disappears. She was told they can be incorrectly diagnosed as amniotic bands. This may be completely different to your situation hon but just thought I'd share. Really hope all

 

[Hoping for no2]

Goes well for you and baby (sorry sent too soon). I'm sure this must be a very worrying time for you. Hugs xxx

 

[Nikkinoodles]

I did a little googling and found this : "Misdiagnosis is also common, so if there are any signs of amniotic bands, further detailed ultrasound tests should be done to assess the severity. 3D ultrasound and MRI can be used for more detailed and accurate diagnosis of bands and the resulting damage/danger to the fetus." So fingers crossed that as previous poster said, they may have got it wrong. But by the looks of it you should def get further scans. Even 3D! Xx

 

[leesey]

I know someone who had this but it was actually an ambiotic sheet not a band which is harmless to the baby and disappears. She was told they can be incorrectly diagnosed as amniotic bands. This may be completely different to your situation hon but just thought I'd share. Really hope all

So it could just be tricky to see on a 2D scan? I'm hoping to go for a 4D to get it properly checked out, if we find out it's a sheet not a band I'd be over the moon xx

 

[leesey]

I did a little googling and found this : "Misdiagnosis is also common, so if there are any signs of amniotic bands, further detailed ultrasound tests should be done to assess the severity. 3D ultrasound and MRI can be used for more detailed and accurate diagnosis of bands and the resulting damage/danger to the fetus." So fingers crossed that as previous poster said, they may have got it wrong. But by the looks of it you should def get further scans. Even 3D! Xx

I already bought a voucher (KGB Deals) a couple of weeks ago and had planned to go at 30 weeks, but I'm going to phone and see if I can take it now, fully accepting that it's not as good in tri 2, hopefully they'll understand my predicament xx

 

[Hoping for no2]

I know someone who had this but it was actually an ambiotic sheet not a band which is harmless to the baby and disappears. She was told they can be incorrectly diagnosed as amniotic bands. This may be completely different to your situation hon but just thought I'd share. Really hope all

So it could just be tricky to see on a 2D scan? I'm hoping to go for a 4D to get it properly checked out, if we find out it's a sheet not a band I'd be over the moon xx

Not sure what type of scan she had I'm afraid. They said straight away it was an amniotic sheet but did say that it is referred to as an amniotic band a lot which is incorrect as they are very different things.

I would def get another scan hon and a second opinion. Best of luck xxx

 

[Mummy_midwife]

I have heard of it and have met a few babies born having had it and all of them were born perfectly healthy , just a few "tight" marks, mainly round their limbs but none that could cause real issues for them long term. I am hoping that they have mis or over diagnosed, and that all is ok with bubs xxx

 

[leesey]

I've updated it in my pregnancy journal at more length, but I've had it confirmed that it is an amniotic band, not an amniotic sheet, so it is the worrying kind. I've got a 4D scan booked for Thursday xx

 

[Hoping for no2]

Really hope all ok hon, best of luck for the scan xxx

 

[Mum2Many]

My cousins baby had to have her arm amputated as a result of amniotic band syndrome. They didn't realise until she was born though so it was a shock for all. However, she's happy and healthy now.

(((((HUGS))))) I hope they come up with some real information for you soon. And beware of Dr. Google - he is not your friend.

 

[leesey]

My cousins baby had to have her arm amputated as a result of amniotic band syndrome. They didn't realise until she was born though so it was a shock for all. However, she's happy and healthy now.

(((((HUGS))))) I hope they come up with some real information for you soon. And beware of Dr. Google - he is not your friend.

We found out tonight that thankfully there has been no damage so far (3D scan). We just have to think positively, and we're more than half way there so just trying to get by week by week and hope that nothing further happens xx

 

[candymycandy]

Hi leesey. That's good news then re the scan results. My sister had this in her first pregnancy.

I expect they'll monitor you closely. It's very good that they've found it relatively early on. I believe they can now operate before the baby is born as well (I think) to try and stop anything developing. Deffo stay away from google and wait to see the consultant. All the best! x

 

[leesey]

Hi leesey. That's good news then re the scan results. My sister had this in her first pregnancy.

I expect they'll monitor you closely. It's very good that they've found it relatively early on. I believe they can now operate before the baby is born as well (I think) to try and stop anything developing. Deffo stay away from google and wait to see the consultant. All the best! x

Unfortunately the midwife said outright that they no longer operate on these things here anymore as the risks outweigh the benefits or something? So it literally is a case of wait and see what damage is/isn't done. And as for monitor closely, they wanted to wait 4 weeks for the next scan hence why we had to go private

I don't feel like we're being very well looked after xx

 

[candymycandy]

Oh I'm sorry to hear that. This was over 9 years ago, I assumed that things might have improved from those days but it's the nhs I guess isn't it although perhaps that's local to your nhs district, is it possible to see about getting referred elsewhere I wonder as I'm sure it must still be an option. They do all sorts in utero these days don't they. Sorry i can't be of more help x

 

[leesey]

Maybe I'll find out otherwise at my consultant appointment next week, but I doubt it! They've not been very helpful thus far so I'm not holding my breath. We'll see! xx

 

[leesey]

We've been given the all clear today

Amniotic band not likely to pose any risk to baby from now on! xx

 

[mum2b410]

Fantastic news hunny! Bet u are over the moon