Foetal anomaly checks.

Packrat

Hi all,

First time poster here with what I'd say is a common set of worries, but about a rare enough condition, and more particularly, the protocol in screening for anomalies in Ireland.

We are expecting our first in three weeks or so. My OH is 29, - never pregnant before. At about 18 -22 weeks she had a scan which showed a slight anomaly with one kidney. Nobody concerned about it and subsequent scans have confirmed that there may be a blockage or something that may require surgery after birth, but still nobody getting concerned.
Now for the interesting bit. I missed all scans due to being away with work, and she recently mentioned that after one the doctor had said that unusually, the umbilical has one vein rather than two. It was just mentioned in passing rather than as a major worry.

So I did what I shouldn't have done and googled it: Seemingly, 75% of babies with this are fine, but 25% have other defects, including, yes, you guessed, - urological problems.... "These May be associated with chromosome disorders, including Edwards syndrome"
So now I Google Edwards syndrome, and that's absolutely horrific. Most don't even make birth, and the rest basically die within days.

My question is: If I can find out all this in 10 minutes, why did nobody screen for chromosome disorders on noticing the single vein umbilical? Every site says that this should be done immediately on noticing this?

Would this be because we are in the public system? (Holles st)

Thanks in advance for any replies,

A very scared Packrat.

Lisha

All I can say is ring your midwife or gp and ask them,
Google is dangerous though and can lead you to worry needlessly. And maybe try not to worry your oh until you hear more .
Best of luck

Packrat

Lisha wrote: »

All I can say is ring your midwife or gp and ask them,
Google is dangerous though and can lead you to worry needlessly. And maybe try not to worry your oh until you hear more .
Best of luck

Thank you, would a gp even know about this stuff though? - it seems like its rare enough - 1% of pregnancies... What I don't need is some doctor telling us "sure twill probably be grand" I know this, but with three weeks left, is it even worth kicking up a fuss with Holles St?

Lisha

3weeks is a long time to be worried.
I would ring hospital and ask can you speak to someone.
Your gp might help to give you questions to ask and who to ask if nothing else.
But dr google is frightening at best of times .
I hope you get answers soon

January

Two of my cousins have had single umbilical arteries and both babies have been fine at birth. One lived in England and there wasn't a second thought about it. The other was having antenatal care in portlaoise and when they spotted it they transferred her to the Coombe for specialist care (extra scans etc). She gave birth in the Coombe but they did not test for Edwards syndrome.

Get onto the hospital first thing on Monday morning and ask them about it. Google gives worst case scenarios but worrying unnecessarily won't help.

indigo twist

I used Google waaaay too much when I was pregnant. I remember reading about Edwards Syndrome, and as you said it is horrific. But, the thing is, something like that would cause major anomalies in all of the major organs - it doesn't really come in a "mild" form. There is absolutely no way that it wouldn't be picked up in the 20 week scan.

As for the umbilical cord only having one vein, I'm pretty sure I read about this in the brochure that Holles St send you with the appointment for the scan? Anyways it can be an indicator for various conditions, and so the midwife doing the scan was probably even more thorough than usual when doing your scan. You have to bear in mind though that she's not necessarily going to tell you that - why would she worry you about all of the potential problems that she is ruling out, if you know what I mean? It's not exactly helpful for her to talk about all the things that can go wrong. She knows what to look out for, but all the parents really need to know is the good news - that all the organs and measurements look healthy. As you said, in the majority of cases, the single vein isn't a cause for concern. You will possibly need to get extra monitoring towards the end of the pregnancy, in case the baby's growth slows down and in this case it's possible that your partner would be induced a little bit early. But it sounds like you've had several scans since then, and I assume baby is growing fine so far. (And again, they mightn't specifically say that they're checking in case of restricted growth - I got very regular scans, and the consultant usually didn't even measure anything, a quick glance at the screen and he could tell that the size seemed OK for my dates.)

I'm not sure if you were present for the "big" 20 week scan? It is really thorough. I remember at ours, it seemed to take forever, and the midwife kept zooming in and out over and over at the same things, writing down notes etc, taking loads of measurements, and I hadn't a notion what was on the screen! At one point she kept zooming in on this big black spot on the screen, I was sure it was a tumour or something ... turns out it was his heart. But basically, it is SO thorough and detailed, and for all the things that the midwife tells you as the scan is going on, they are not telling you all of the horrible things that they have ruled out.

When you say that there should have been screening done for chromosome disorders because of the single vein, I'd suggest that the appropriate course of action was an extra-thorough check of all internal organs, and that's how the slight kidney disorder was picked up. Because absolutely everything else was healthy and normal, I'd suggest that this was enough to rule out the possibility of most disorders (certainly enough to rule out something as serious as Edwards Syndrome!) Maybe the kidney is related to the fact that there's only one vein; maybe it's not; either way, once all the other organs are functioning normally, it doesn't sound like a major source of concern. By the way, the single vein cord would definitely have been picked up at the 20-week-scan - it's one of the things they specifically check, you should see it on the print-out they put on the hospital chart. So it's not a case that someone just randomly noticed this at a later date, and didn't know that it could be an indicator for other problems - the hospital staff are definitely well aware of potential issues and have ruled them out.

If you weren't present for the scans, it might be a good idea to have a really good read through your partner's chart (these are usually brought home by the mother in between appointments.) It might put your mind at ease that everything has been checked.

You're asking if being public has made a difference in how this was dealt with - I honestly don't think so. From all of the research I've heard about Holles St, and from anecdotal evidence, the big difference between public and private care there is mostly just that you're stuck on the overcrowded and understaffed public wards after the birth. For the pregnancy itself, the care given is much the same. Sometimes you will see someone on the consultant's team rather than the consultant themselves; this wasn't a problem for me at all. Also the consultant probably won't be present at the birth; again I had no problem with this. I really don't think going private would have made any difference in how the scan results were addressed by the hospital.

By the way, from what I read what I was pregnant, some people become concerned that if something is picked up on the scan, you won't be told because (with Irish legislation) you can't "do anything about it" anyways. In case this was a fear of yours, I can tell you for certain that it is NOT the case. Any anomaly, any abnormality, you will be informed of. This is why you've been told about the single vein - which may not present any issues - and this is why you've been told about the minor kidney abnormality - which may amount to nothing that even needs treatment or surgery. They will tell you any concern that they might have.

Basically I would advise you to relax, and enjoy the rest of the pregnancy, and look forward to meeting your little one. Holles St is an excellent hospital, and I don't think you have anything to worry about.

Packrat

Many thanks those of you who replied.

Lisha and January, I will get on to tgem on Monday. Thanks for the advice.

indigo twist, wow, thanks for taking what must have been at least a half hour of your life to write that post. You have re assured me a lot. What you wrote makes perfect sense, and is probably what I'd say to someone else if I wasn't as worried myself.

Once again, thank you all. I'll update this thread when I know more.

Packrat.

lazygal

You could pay for a second anomaly scan in the Merrion clinic attached to Holles St if you wanted reassurance. Pm me if you need any information.

January

I had an anomaly scan with a consultant in the Rotunda at 37 weeks and she said that things aren't so clear then because baby is all squashed up and she couldn't see parts of the chambers of the heart, kidneys etc at that stage because of the way baby was.

lazygal

From my understanding34 weeks is the optimal time for a late anomaly scan. It was when I had my second ones both times.

Packrat

Just to update, - and sorry to see indigo is gone.

Baby Packrat is now 5 weeks old and whilst he has been confirmed to have only one functioning kidney, is doing ok. He has spent some time in ICU in Holles St, and also in Temple St, and has a long road ahead of him, but is currently ok.

Incidentally, I was disappointed that after birth, I had to press Holles st to do a scan, - they were about to send him home, and immediately after the scan I pressed for, they sent him to ICU instead.
"Nothing to worry about, -we'll do a scan after birth" turned into:
"Ok, if you'd be happier we did one" then suddenly turned into:
"This is serious, - He may be going to Manchester for surgery"

Seriously unimpressed with Holles st.

I'd shudder to think what would happen to a child without a parent who questions and follows up and even almost harasses the midwives until they actually call a doctor - in a training hospital of all places.