Amniotic band - has anyone else? What can be done?

[Firecracker]

Hi All,

At a private scan today we were told I have an amniotic band, apparently it is rare and can cause issues with the baby. Fortunately my band is at the top of the (sack?/placenta?/uterus?)- should have listened! rather than middle or bottom... which apparently if lower is much more high risk.

Apparently the baby can get caught in the band, causing birth defects in growth & development. If it tangles around a leg or arm, it won't grow.

Quite worried and just wondered if anyone else has had this, how it turned out? Any complications or did it work out in the end? Apparently there is nothing we can do other than hope for the best! Yikes! xx

 

[candymycandy]

Hi firecracker. Sorry you’re having this stress. My nephew had this when my sister was pregnant 14 years ago now. Have you been in touch with your MW to arrange a nhs scan? Before your 20 week scan I mean. they’ll do further investigations. I’m sure things have progressed significantly now which is good, when my sister was pregnant they could’ve done surgery to release them in utero. Unfortunately they didn’t see them at her 20 week scan so it’s good they’ve caught you early (13 weeks by your ticker?). Any way, don’t google and contact your mw. Not sure what ‘at the top’ means but fx your mw can help put your mind at ease xx

 

[Firecracker]

Hi candymycandy, thanks very much for the advice. I haven't contacted the midwife yet so i'll do that on Monday, thats good because the 20 week scan isn't until August so I was worried about waiting until then.

Thanks again xx

 

[CharlotteH24]

I’m sorry to hear your news, however if it is what the private sonographer thinks it is then you will likely be referred to a fetal medicine unit after your 20 week anomaly scan. Chances are that you will have heard right, that the fibres are towards the top of the sac, the sac has two layers (amnion and chorion) and in cases like these it’s believed that the amnion (closest to baby) ruptures but the chorion stays in tact. This leaves particles in the fluid which can get tangled on baby.
As far as I’m aware it’s main risk is that it can cause deformities if the particles get tangled up on baby, it’s basically like putting a rubber band around a finger. There are things which doctors can do before birth and after although I’m not 100% sure what is and isn’t offered here in the UK. There’s in-utero surgery and there’s procedures to force the baby’s body to make more bone and definitely procedures to correct club foot and cleft lip which have both been linked to the syndrome.
It will be a lot to take in, but wait for your anomaly scan. I’m surprised that the private sonographer decided to do a diagnostic anomaly scan at just 14 weeks actually, a lot of private scans aren’t diagnostic and ultrasound images can drastically change between first trimester and second trimester. You could try speaking to your midwife about whether she can get you a slightly earlier scan, she may or may not be able to though as it’s the scan department who choose who needs to be seen. Xx

 

[Firecracker]

Hi Charlotte, thank you so much for your message and very helpful information. Sorry for the delay in my reply, i've only just seen it. I have the midwife appointment tomorrow so will see what they say.
Thanks again xx