Isolated absent ductus venosus

[beachbum85]

I just wanted to share our experience, after the fact, because I drove myself mad searching for information when we received the diagnosis of an absent ductus venosus and could hardly find anything that matched our exact circumstances.

At our 12w scan, we were told our baby had a high NT measurement at 3mm and a suspected absent ductus venosus. Together, they were potential indicators of Down's Syndrome or another chromosomal condition, but we had already done the Panorama test with low risk on all counts and a fetal fraction of over 11%, so we were told that those specific syndromes were not a concern, but an absent ductus venosus could indicate a less common genetic condition or cardiac issues. The absent ductus venosus was confirmed at a 16w scan and then an 18w scan, at which point we were encouraged to carry out an amniocentesis, mainly to rule out Noonan's syndrome which, combined with the missing ductus venosus, would likely have severe implications and TFMR would have been recommended. Thankfully, 5w later the amnio results came back all clear. We also had a couple of fetal cardiac scans at 22w and 27w that also came back clear, and some extra growth scans that confirmed that the absent ductus venosus was an isolated finding and that the blood was flowing through the liver (the best case scenario when the ductus venosus is missing).

Our daughter was born healthy and well a couple of weeks ago and her pediatric echocardiogram at 1w was completely normal. We're now waiting for a liver ultrasound to confirm that there are no consequences of the blood flowing through the liver instead of th ductus venosus, but we've been told it's really just a formality at this point.

The amount of information I could find related to ADV was limited and often linked to additional issues. I read all the medical journal articles I could find, but they were much too cmplex for me to understand, in most cases. I couldn't believe there were no posts on here, so I'm just sharing in the hope that it gives reassurance or at least makes someone feel less alone in a similar situation.

Thank you so much for taking the time to post this. I have just had a diagnosis of absent ductous venosus at 36 weeks having transferred my care to a different hospital/trust.

Nothing of note has been picked up at either of our 12 or 20 week scans and we’ve been reassured that it is an isolated finding and that blood is flowing through the liver (the same as you).

It’s sent me a bit off balance as my previous pregnancy was uneventful (apart from a missed breech at full term) and the rarity of the condition means there is little information or information or experience out there.

So your generous post is so very much appreciated at this time of feeling a bit confused and worried about what this means for us. Thank you 💜

You're most welcome @Regmum27

I'm glad our experience has been of help and I can add that, in the meantime, the liver ultrasound was also normal. Totally understand the stress of the situation after an uneventful first pregnancy... And I can imagine it's overwhelming when the diagnosis comes so late too! Thanks for taking the time to post and share.

Wishing you a smooth birth and I hope all is well with both you and baby 💛

I’m sure I posted about my experience at the time (almost 5 years ago) but maybe it didn’t come up in searches. I had identical twin girls and one of them had an absent ductus venosus, a velamentous cord insertion and a single umbilical artery. We were told to have further genetic testing for all of the above reasons. Meanwhile, her identical twin presented completely typically, no issues. We went with our gut and declined invasive testing and they were both born healthy at 34 weeks. They have no genetic condition and are growing just fine and are now healthy 4.5 year olds! Just to add another story in case anyone finds this post 😊

Thank you @MilsCookie appreciate you taking the time to share. it’s a been over a week now since we’ve had the diagnosis and I’m feeling much more positive/at peace with the whole situation after feeling very winded by the initial news. I’m 37 weeks now and focused on slowing down and getting excited about meeting my baby

An update from me. We had our little girl 3 weeks ago. She had some blood tests when born and we’ve just been given the all clear after an ultrasound on her liver. She’s totally perfect in every way and feeling incredible grateful. Hopefully these posts will reassure anyone going through the same thing, as they did for me!