bilateral renal agenesis

[cremegg]

Hi all,

Wondering if anyone had heard of bilateral renal agenesis?
Basically I had my 20 wk scan last week, where my baby was diagnosed with this.
I had a medically advised termination on Tues and my tiny baby boy was still born on Thursday.
It has been awful and so sad, and I can't believe we thought we were halfway through and everything would be fine.
Therefore any info to help me figure out why this might have happened would be appreciated.
Doctors are optimistic that it was random rather than genetic, but I am aware there is a chance (3% apparently) that it is due to genes.
Thank you

should also prob explain basically the baby's kidneys did not form, therefore he could not create fluid, and therefore the lungs would never have developed.

Hi Cremegg

I hadn't heard of this until I had the same experience as you at my 20 week anomaly scan. It's so hard to hear that your baby wouldn't be able to survive as wouldn't develop lungs, and I am very sorry that you too lost your baby to this fatal condition.

I hesitate to tell my whole story as it is shocking, but prior to losing that baby, I also lost a baby to a completely different condition - a fatal chromosomal disorder - at 13 weeks gestation. Consultants were sure the two babies conditions were not at all linked. I am less sure, although my hunch has no medical grounding.

Anyway, on a much more positive note, I also have two very healthy DDs, one born before I lost the 2 babies and the youngest born nearly a year ago, after I lost the two babies. Despite there being nothing to suggest that either of the two conditions my babies had had would recur in the latest pregnancy, I had lots of scanning. I was seen in foetal medicine and had nuchal/combined test at 12 weeks, then a specific kidney scan at 14 weeks, as consultant thought we would be able to detect problems around then, then the anomaly scan early at 19 weeks, then 4-weekly from then on, and all was fine.

In general, I gather, from extensive research, renal agenesis does not recur and you should conceive a healthy baby next time around. Knowing that doesn't really make it any easier though; pregnancy just becomes so horribly scary. But you will be monitored.

Finally I just want to say there is a support thread for women who have terminated for abnormalities, which is in this part of the board (no time to link), so do join us as it helps to talk about it with people who get it.

And for now, be as kind as you can to yourself, and allow yourself to grieve and heal as you feel works best. Good luck.

Hi

My baby girl Fern was born at nearly 25 weeks having been diagnosed with Bilateral Renal Agenesis at our 20 week scan-this was on 26th November.

I am lucky to have 3 lovely healthy little girls already and so there seems there was really no reason why this happened to me. Scans had always been really happy occasions and while I'd heard of women and babies having problems at the 20 week scan it never properly occurred to me that it could be me or my baby.

We had Fern's final PM results last week so know now that there was nothing hereditary about her condition and we have been told there's no reason why it should happen a second time.

Thank you both for your messages, sorry to hear of your losses too. We went into our scan so bubbly and excited to find out the sex, it's so awful how this can get turned on it's head quite so drastically. I kind of feel for the sonographers, must be pretty terrible to crush the couple sitting in front of you so badly.

It has helped me to know that both of you have been told it was a random occurence, and I sincerely hope we get the same news.

Also really helps to hear of your other DDs so thank you so much for replying to me.

cantdo I shall check out the group you mentionned.

Thanks again, CE

Hi cremegg - I'm so very sorry for your loss. I lost my baby boy at 22 weeks in August 2009 also due to a diagnosis of bilateral renal agenesis at our 20 week anomoly scan. Nothing can prepare you for the shock and overwhelming grief.

I just wanted to echo what the other ladies have said. I was told that it 'was just one of those things' and was 'highly unlikely to reoccur.' Having googled the condition like mad, as I was concerned there may be a genetic link (despite the doctors and professsors at Kings telling me otherwise), I found some information on the potter's syndrome website to suggest that there may be a 3% reoccurance risk - this may be where the 3% you have been quoted has come from. I think the main message to take away though is that it is highly unlikely to reoccur - I vividly remember the Professor at Kings College Hospital holding my hand after scanning me and telling me 'this won't happen again.'

Future pregnancies are scary following a traumatic event like this but you will be looked after more closely and given reassurance earlier. I am currently 32 weeks pregnant to a healthy little girl. Although I won't fully relax until she is in my arms I have been scanned at 6, 12, 16, 20 and 28 weeks (and will be again at 34 weeks). We saw her kidneys and bladder emptying very clearly at the 16 week scan.

I also wanted to recommend ARC www.arc-uk.org/need-help/ . They have a helpline and forum especially for ladies who have had to experience an interruption to their pregnancies following antenatal screening. If you drop them an email they will add you to the forum - it saved my life in the early days following the loss of my son and I have met some amazing people through the forum.

I wish you lots of strength in the coming months. Be kind to yourself.

xxx

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