Please help, I am losing my mind.

[Nikitab123]

I have just been for my anomaly scan at 20 weeks, the sonographer has said my baby has a heart problem, I am being refered to Leicester but this is a week away and mentally I cannot wait that long, any help / advise / similar experiences and outcomes would help massively. Could it be nothing? Could it be something small / and still able to live a normal life? Please help 😭

Hi OP, did they mention anything else? What kind of problem? The report doesn't really say anything concrete does it, what a worry for you.

Hi! I had a scan on Friday (30/06/25) and they said I had a 4.0 X 2.3 placental lake, and then sent me for the re scan today (03/06/25) in which they told me they had concerns for the heart (unexpected ultrasound appearances). Could this be the reason for the potential heart defects? I feel so sick with worry. I have to wait till Monday to go back to the hospital and then see what date I can be referred to Leicester for the cardiology specialist :(

A quick read didn't suggest that the placental lakes are a cause for heart problems. It's a shame they didn't explain more thoroughly but maybe better than speculation. Try to distract yourself until each appointment, I'm familiar with the feeling.

Hi. I was in a similar situation to yourself regarding a potential cardiac anomaly. I had a private scan at 17 weeks where they thought the heart looked slightly odd. I then had weekly scans until they eventually sent me to fetal medicine. I seen the cardiologist there and she was amazing. Thankfully it was nothing and she had no concerns. I had a month of worrying myself sick. Fetal medicine are the experts so they will keep you right. Its pretty rubbish the person doing the scan didn't talk you through the potential problem though, thats bad practice. Hopefully fetal medicine will provide you with all the answers and give you some good news

Hi lovely, did they say what may have caused the concern for the anomaly in the first place? My mind is just in over drive I’m so full of worry. I don’t know what questions to even ask because they just told me they had concerns about his heart and then sent me home. I feel lost

So they originally thought he had an enlarged right atrium. Then they thought it was possibly excess fluid around the right side only. I was only 17 weeks at the time so it was hard for them to tell me for definite. Thats why i had weekly scans to see if it got worse or they could get a better view. I have to say my hospital were amazing with me and talked me through everything, pointed out exactly where they thought they could see something. Then i was referred to fetal medicine and the consultant said she wasnt concerned and he looked healthy within 5 minutes of scanning me. I had an amniocentesis done whilst i was at fetal medicine just to completely put my mind at ease that there were no genetic abnormalities going on (i previously had a 1 in 45 chance of downs syndrome but my NIPT came back low risk). Its awful that your trust havent been as thorough with you about what they think may be going on! I think sometimes they dont want to "worry" the mums but infact, not telling us anything makes us 100x worse! I had all the information and i didnt stop worrying and googling stuff! Im hoping you get some answers soon and that it turns out to be nothing at all! I just wanted to share that they can "pick up" on things and them turn out to be nothing to worry about, like in my case.

They haven’t even said possibilities to me, they just left me with the ‘ we think there may be an abnormality / defect. Also my first test also came back higher risk, (1 in 108) for Down’s syndrome, NIPT came back low risk after this, I am going to fetal medicine Monday and then they are referring me to cardiology in Leicester to see the professional baby heart doctor. It’s not fair that they leave you with news like this and make you wait so long! Counting the days to Monday hoping that all is ok after all, thank you for sharing your story / helping me. You have definitely calmed my nerves slightly 🩷

I just called fetal medicine, she says in my report they may have detected a structural abnormality, what could this mean? I am now booked in at Leicester cardiology on Monday.

'Structural' means literally the build of the heart - how it's formed. So could be anything from the shape of chambers, valves etc. Could also be absolutely nothing and just looked a bit odd on the scan.

The wait is by far the worst bit. I hope Monday comes around quickly for you x

My daughter had a hole in heart, it’s normal apparently, a lot of babies are born with then, and it’s not often picked up, if it is picked up majority close on their own, it’s usually caused by a value that corrects itself!
my daughters didn’t close up until she was 7, didn’t cause her any problems, no issues at all

It could be a number of things, also could be minor (although you'll be thinking the absolute worst!) You have the referral so its just having the agonising wait to see what they say. The specialists will know best and will explain everything to you in detail if they find something. Hold on to the fact they have said 'may have' it might turn out to be something insignificant. Its such a long horrible wait, i didnt sleep for a good few weeks. My cardiologist said all babies hearts are so different, they are also tiny at 20 weeks, so it could be something that resolves itself before birth. Its so hard to automatically think of the worst case scenario (which is exactly what i did, i struggled to bond, think of names or anything whilst all this was going on) but honestly, hold on to the fact it "may" be nothing x

My baby was not diagnosed until after he was born. He was treated at Leicester too. They were amazing. They saved his life while being so kind, explaining everything at every stage and looking after him so well.

I really hope that it turns out that your baby has a healthy heart. However, if (s)he does not, you are in very good hands.

Did you not have the opportunity to talk to a consultant after your scan?

As a side note, I would ask MN to edit or delete the picture in your original post OP. You’ve left the names of the sonographers on that image, I work at RDH and know these two women.

I’m not sure who I spoke to afterwards, I think it was a midwife, it was abit of a blur having received such news, and I didn’t realise it was a problem with the sonographers name? I haven’t slandered or anything I’m just seeing advise / similar experiences to ease my mind

UPDATE- I have been for my scan this morning at Fetal Medicine, they have detected 2 small holes in babies heart (VSD) and a slight narrowing of the aortic valve.

anybody had the same/similar experience? Will baby be ok?

Well what did the consultant say? None of us can say on here as we weren't looking at the scans - they must have given you some idea of prognosis?

Hi OP, if you google "Mumsnet VSD" or "Mumsnet holes in heart" it'll bring up lots of threads about this, just in case not so many people respond (assuming it's relatively rare).

I have just got home, my baby has been diagnosed with Truncus Arteriosus. I feel very numb and I don’t know what to do.

Sorry op you’ve not had the best news but dr google does suggest that surgery may well be an option once baby is here. Doctors, nurses and surgeons these days are phenomenal as you know and will do whatever that can for you and your baby. You need to look after yourself, your mental health and stress levels and take each day as it comes. This is your first test as a mother which is to be strong and take each day as it comes

I'm really sorry to hear this. Did they talk you through the condition and what it means for baby?

I am devastated. The cardiologist confirmed baby would need to have surgery before he is able to come home. And then possibly spend weeks In hospital afterwards, and will need another 3/4 as he grows up. I really can’t think straight, I don’t know what quality of life the baby would have, I’m just very very overwhelmed and scared.

Mostly, as they were telling me I sort of felt myself dissociating and everything just was a blur. He will need surgery as soon as he is born, and then a few weeks stay in hospital. As he grows up he would need a few more surgeries too. I just don’t know what to think 😭

I’m really sorry to hear your news. I would very strongly recommend calling ARC (antenatal results and choices) first thing in the morning. I found them really helpful and calm when dealing with difficult test results in pregnancy.

www.arc-uk.org

Im so sorry. You are clearly a caring and brilliant mother already that shows in your posts. Thinking straight right now may be beyond your control and you know what that’s ok, that is completely normal response. The poster below mentioned people to contact that sounds like a great start. The baby will be loved and cared for by you know matter what. You are right in the thick of it at the moment and the news is a shock so the way your feeling is the correct way to be feeling. Your allowed to feel devastated, your feelings are valid. OP you are strong you are capable and you will get through whatever life throws at you