20 week scan - baby heart issue PLSVC :(

[Babysmith0506]

We had our 20 week scan yesterday and unfortunately they found a Persistent left superior vena cava heart issue

PLSVC as it is known apparently all babies have 4 blood vessels stemming from the heart until 8 weeks gestation and then one recedes and you’re left with 3. Unfortunately our baby still has 4 vessels at 20 weeks, so we need to see a detail cardiologist. They said the other aspects of the heart look normal and they are hoping this is just an asymptomatic anomaly. But we won’t know that until we have a more detailed echo scan I assume.

We are so so so worried and it was a big shock, apparently this only happens in 0.3% of people so it’s really rare. Has anyone experienced this with their babies or kids?

Sorry no experience, but sending you well wishes. When will you get cardiac scan?

Thank you. They have said it should be within 3-5 days. It’s like time has stood still just waiting to be seen. This baby is IVF so it feels like such a milestone to have even got to this point and then to get crushed with this news is horrific x

Hi @Babysmith0506
I was just reading your post and we also had IVF and have just had our 20 week scan today with the same findings. What was your outcome with cardiology? Is your little baby okay? Xx

My little boy has a PLSVC, he's 2. After the immediate panic, tests and the additional scans and my own googling - this 'worst moment of my life' has melted away from my memory. But at the time it was a very dark few weeks I didn't shake off quickly.

My little boy is super duper healthy. Never had a stomach bug (had lots of rashes, coughs and sneezes from nursery however), eats like a champ, tall for his age, hit all his milestones (walking early), loves doing jigsaws meant for 3-4 yr olds and never stops smiling. We do lots and lots of classes and activities like football and swimming etc which he loves. Nobody would ever guess what we went through and the different end scenarios that went through my head.

Prenatal - We had amniocentesis (for chromosomal additions/deletions), extra scans which found nothing else notable re. the heart, lots of talks with consultants etc. A scan also picked up a SUA in the umbilical chord but again very common and on birth notes it said this actually wasn't present so another thing to worry about that perhaps wasn't even there.

Postnatal - We had a scan after birth where he did have a tiny hole (VSD) very very common, but closed up within months. We had a scan after a year and then a scan at 18 months and we have another at 30 months just to have another check (as baby hearts are teeny tiny, it's easier to see when they are a little older).

A PLSVC is a clinically insignificant finding so long as the rest of the heart looks as it should ie 4 chambers and the PLSVC entering into the correct place. It has no impact on your child's life if it's an isolated finding.

Also please note, the stat is that it is found in 0.3% of babies, but it's a subtle finding in a view (the 3VT, relatively new view due to modern tech) which isn't always looked at especially if the 4 chambers look normal and are working fine. I've heard it's more like 1 in 10-20 people have this normal variant but as it's not always looked for in scans and it's asymptomatic it's easy to not know if you have it.

I heard a rumor that there is actually an argument going on around the NHS that looking at the 3VT view won't show you anything significant if the rest of the heart looks good so a finding such as this may cause a pregnant person to panic unnecessarily. It is also extra time and extra cost to the NHS so perhaps they will phase it out (don't quote me though).

Some of this hopefully will give you some comfort that it will be ok.

Silly me - just realised the original post was 6 months ago! Hopefully my post will be helpful to someone else searching for answers on PLSVC x

@Apeanutisnotanut The original post was months ago but my post was yesterday and so was my 20 week scan so thank you so much for such an informative and reassuring post. You really have made me feel at much more ease! X

Hi ladies, great to hear from you! I really struggled at time of our babies diagnosis to find anyone that also had this with their children or pregnant. Interesting that 2 of us both had IVF pregnancies and had this, wonder if it’s more common with fertility treatments.
Im happy to report though our darling son was born 3 weeks ago :) he is healthy and thriving. Yes he will always have the SVC but at the moment there are no additional signs of Coartation of the Aorta which can happen as a result of the SVC. We had echos throughout my pregnancy and then again when he was born and they’ve been really on top of the checks.

It is interesting you mention a VSD, we had his echo last week and they mentioned a tiny hole but said it was normal and all babies have it? It has panicked us. As we thought if normal then why even mention it? They are doing another echo when he’s 9 months old to check it’s closed but it’s tiny apparently.

Happy to chat further with either of you about this as I know it’s a lonely place when your baby gets diagnosed or also I have more questions seeing your child has been experiencing this already! So please drop me a message back. Not sure how to set up a group message on here :)

Hi please can I have some advice, we had our 20 week scan yesterday and also had an additional vessel lateral to the PA. With persisting left superior vena cava. This makes absolutely no sense to me and when asking the midwife she said she couldn’t tell me anything as she wasn’t a DR. I’m super worried and just looking for some reassurance on what’s next, we have been referred to fetal medicine

Hey! I’ve sent you a private message x

Yeah same for my baby at 20 weeks..really worried with plsvc. Not seeing much info in google as well

Hi, I’m now 27 weeks pregnant and have had two special scans with cardiologists checking over my baby and the conclusion they have come to for us is that it’s variant of normal.
we still have another scan at 29 weeks and 32 weeks to double check again but try not too worry too much until you have seen the specialists they explain things so well and yes I went out of my mind googling everything and couldn’t find the proper answers until I really saw the specialists. I hope you are okay try not too panic

So at our second attempt for our 20 week scan yesterday (baby was in an awkward position for the first attempt), the sonographer wrote “Persistent left superior vena cava noted”. Everything else seemed normal. The baby was still in an awkward position aswell so they didn’t really get a good look and she did say it could be nothing but iv been referred to fetal medicine for a follow up scan. What are the chances of it being nothing and due to the awkward positioning of the baby. I am besides myself with worry and can’t seem to find much info online

Hi I’ve just seen your post and thought I’d reply for some peace of mind. We had the same and i have posted previously on this thread. Everything was actually fine with our son in the end. He had an ultrasound post birth at 2 weeks old to double check his heart and it was fine. Try not to stress yourself out too much until you get to see fetal med. I was in the same position and couldn’t find anything on the internet either to stop me from worrying so much. They told us that it was really common and wouldn’t affect the baby

@T12456 Thank you for responding. We actually have an appointment for an echo at great olmond street today so should know more later on today. Iv hardly slept all night. I’m praying for good news.

@T12456 We have just got home from our appointment. So she has an extra vein but her heart is working as it should. It can be a marker for downs so they want me to have another scan at the hospital to look again at everything else. But this is just a precaution.

For now everything is fine and I feel like I can breathe! I also have to go back in may for another check on her heart and they recommend to take her within her first year to check it again. But for the most part it’s a “variation of normal” and won’t effect her life in anyway xx

Hey! I’m copying and pasting a message I sent to someone else on another group. Hope you find this useful, welcome to DM me if you need more support.
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That’s literally what we were told, our baby has an extra blood vessel in his heart so PLSVC, on its own PLSVC is a variant of normal, so it’s just there and just an additional route the blood flows through. The reason it can be risky is because sometimes when they have PLSVC it can have other issues too that go in hand. But in our babies case it was just an anomaly. We had echos while I was pregnant to check his heart through my belly every 5-6 weeks for the rest of my pregnancy they were so thorough. I literally was devastated at the thought of him needing heart surgery. He’s going to be 2 in May and is happy and healthy and hasn’t needed surgery so far. Yes he has the PLSVC but it hasn’t caused COA which is coartation of the aorta. That does need surgery as is a narrowing of the valve. This can be a side effect of having PLSVC but not everyone has it. That’s why they monitor during pregnancy as COA does require surgery within about 48 hours of birth. They were confident about a week before I gave birth that he didn’t have that from the scans but they can’t know 100% til birth. As soon as he was born they took him paediatrics even before I held him to do an ECG which I didn’t mind as long as he was ok. If they thought he had COA i would have had to give birth at the Evelina in London as they specialise in heart babies. But because they were comfortable he didn’t and more or less sure I have birth in my local hospital. Then 3 weeks after birth he had another echo and they said no COA. But could obvs see the PLSVC. Since he’s been born he’s had heart echos every 6-9 months. He has another on Monday. This is routine to just check nothing changes as his heart grows. So that’s reassuring. I was honestly like my world was going to end when we got told. And I found it really hard to find anyone who had babies with it. But I joined a Facebook group that deals with heart babies and it was a huge support and source of information for us. A lot of people in the world actually have PLSVC and they don’t find out until they’re adults and have routine surgeries for things. It’s only because they started scanning for it on 20 week checks about 5-6 years ago that they’re not discovering it’s more common hence why they check for it now. I hope that reassures you a bit although I know that’s easier said than done? We have an older son also and for all we know he could have it too and we’re none the wiser! Anyone of us could be walking round with it. Where are you based are you in England? If yes I can send you details of the FB support group. Got tons of info on all baby heart stuff I even did 6 free support group sessions with them virtually with someone who runs it and other parents to be who had been told their baby had heart issues x
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And just so you don’t worry that you’ve ’done’ something wrong, it only happens because when a fetus is being developed up to 8 weeks (so really early stages of pregnancy) ALL babies have that extra vessel the PLSVC, and it normally dissolves by 8 weeks gestation, the reason they have the PLSVC is because theirs hasn’t dissolved. It’s just stayed there. Our cardio likened it having an extra toe or finger which some people have. And the only thing he can’t do is go deep sea diving when he’s older like the PADI diving with oxygen tank due to the deep water pressure as that’s not good for hearts, for anyone let alone people with heart issues / PLSVC. But other than that they can literally be Olympians 😂

I burst into tears at every single appointment we had after that. But I just think ask many questions as you have, I repeated myself multiple times during appointments to truly understand it all as it’s quite complex really and then I’d get my husband to remind of it all on the way home as I think when you’re worried or shocked it’s hard to absorb the information. They were the same with us. Quite nonchalant about it all and told us not to worry. But to them they said this is ‘minor’ really in the grand scheme of heart issues that they see. What I kept telling myself is a lot of heart things can actually be fixed with surgery if it ended up coming to that. It just sounds more scary as it’s heart related. Oh bless your little boy, my friends girl has that, and her other daughter doesn’t - so it really is just ‘bad luck’ when they get things. Since it all happened I’ve been just telling myself that if everyone got scanned to the level they do now they’d find something wrong or not quite ‘normal’ with every single person on the planet. Our second baby is IVF as we had secondary infertility, so I then blamed it on IVF. But I know tons of people who have IVF babies and their babies don’t have issues. It’s unfortunate when these things happen but I figure something will crop up now or even when they’re teenagers it’s just a case of when not if x

@Babysmith0506 Thank you so much for responding. I think one of the hardest things for me has been the lack of information on PLSVC. I keep telling myself logically we have been told not to worry right now and we should just be taking things as they come and listening to the advice as it comes. It’s just so hard and has been a real emotional rollercoaster the last few days.

I have a scan at my local hospitals fetal medicine unit on Wednesday to double check they don’t have any other concerns or things that could suggest chromosomal changes. Although I was low risk at my 12 week scan, so we’re hopeful to get the all clear.

The rest of baby’s heart looked normal when we had the echo on Friday and they will check it again when I am 30 weeks. Iv been told that providing all further scans are reassuring I won’t have to change my birth plan and will just need to take baby to have an echo shortly after birth.

I am in England, London.

We also have two healthy children so being hit with something like this feels hard to process, i really am just praying for the best possible outcome!

Hi all, I am 21 weeks with twins after struggling with infertility and IVF. We were over the moon for 5 months till last week’s anomaly scan where a PLSVC was identified. That was a private scan after UCLH’s 19 week found no issues! The doctor suggested Fetal echo and amnio for possible connection with chromosomal issues. I am very worried how to proceed. Is it too late for amnio? How are you getting on with your babies so far? Any advice is more than welcome. I found this post and gave me some hope. Thanks everyone.

@Eirth25 Im so sorry, I know how worrying it is to be told that something could be wrong. So I am currently 28 weeks pregnant, at the scan I had done at my local hospitals fetal medicine unit, they found no concerns. Discussed further testing but they were in agreement with us that it wasn’t worth the possible risk with it being invasive.

I have another scan at GOSH on the 21st when I will be 30 weeks to check babies heart again…. For now at least no one seems concerned and we are hoping it is just one of those things… a “variation of normal” as we have had it described.

I would ask for a fetal heart scan to determine if there is a PLSVC. remember this alone does not mean anything is ‘wrong’.. it can just mean other problems can be more likely so things need to be checked over (especially the heart).

Iv also read that a PLSVC can only be seen in one specific view during ultrasound and that it’s not always checked. It is also a fairly new technique so there’s likely a lot more people who have a PLSVC and just don’t know about it as it causes no problems!

@mumaabear thanks so much for your reply :) I am so happy that your baby is doing well! I have called UCLH and asked for a heart scan. They said tomorrow they will check it as today is a bank holiday. Hopefully they will arrange an appointment soon. We have done basic NIPT privately and it was all clear as well! Can I ask you in which hospital you are? It seems that your hospital found it in the 20 week scan. How long did you have to wait for the heart scan?

Funny enough I almost went to the UCLH aswell but I am under The Royal Free. I know it was quite a senior ultrasound technician who scanned me I’m not sure if that had nothing to do with it. After my scan (on the Wednesday) they referred me to GOSH and I was seen on the Friday. The following Wednesday I had another scan at the royal free with the fetal medicine unit where they checked over everything in detail again to see if they had any other concerns. They didn’t find anything and discharged me from fetal medicine.

It still feels along way to go because we don’t have all the answers yet as need another scan at Gosh with the specialist and I want to ask what it means when baby is born… I know she will need her heart checked again but not sure about the timeframe after birth.

but as I said so far it’s been positive and we are staying to stay positive and not worry unnecessarily!

I hope you get some more answers soon xx

Thanks so much @mumaabear . We were seen on Tuesday in UCLH by a team of fetal cardiologists from GOSH along with a fetal medicine specialist in UCLH (there were too many people in the room!). They confirmed the finding as isolated and reassured us this is a normal variant! GOSH will see us again in week 28. I am pretty relieved but can’t help myself thinking about any genetic conditions as they said this might happen 1% of the cases - UCLH said we can do amnio if we want however the fetal medicine consultant suggested that he does not see the need for one! So we decided not to proceed with it. Hope every thing turns out well :)

@Eirth25 Thats great news! Try to relax a little bit now and enjoy your pregnancy! It’s sounds pretty similar to our experience with the specialists. I will keep posted on updates after our 30 week fetal heart scan, so hopefully it will provide reassurance for anyone else going through this. x

@Eirth25 i just had the second scan at GOSH. Nothings changed all the best news we could have had right now. The dr has asked that the baby has another heart scan a few weeks after birth but this will only need to be at my regular hospital and is just to check everything is still looking good. If all is well with this scan then the baby shouldn’t need regular check ups and it shouldn’t cause any issues for her. It’s just something that will need to be noted on her medical records incase she ever needs surgery when she’s older. Hopeful that all will be well when she’s born! Now I’m going to try to just enjoy the last few weeks of pregnancy ❤️

That’s excellent news. I am very happy for you and your little girl! I hope everything goes well. And thanks so much for the update, it is such a relief. So are you planning to give birth at your local hospital? No change in birth plans right?