Bad news at 20 week scan, please help.

[No1worrier]

I hope someone can tell me their experiences from something similar. I have just been told at my 20 week scan my little girl has something seriously wrong with her heart. I have been referred to the fetal medication unit to see a specialist cardiologist tomorrow. She is moving so much, heartbeat has been strong since was 6 and a half weeks pregnant, everything else like her brain, kidneys etc look fine but something is so badly wrong with her heart. I'm so confused 😥. The consultant at the hospital didn't say what he thought it looked like but he said it was serious and I will probably be given options, one being it is fixable, another is ending the pregnancy which we refuse to do! I am 21 weeks pregnant now so more than half way and I can't even think about ending it. All I know is she doesn't have the normal 4 chambers etc like a heart should have. Sorry I don't have much more information than this, we don't get to take notes away home with us at our hospital. Any input would be appreciated 💗

Sorry forgot to mention my down syndrome screening bloods came back as 1 in 99,000

Hi OP, I’m so sorry you didn’t get good news at your scan. I don’t have personal experience of this in terms of my own pregnancy but I used to work on paediatric cardiac unit and I looked after many many babies who had cardiac abnormalities and had undergone heart surgery. Many of them had surgery at just a few days old and almost all recovered incredibly well.

It’s hard to say anything specific as you aren’t sure what the exact issue with your little one is, but I hope that gives you a little reassurance if surgery is an option for your baby.

Wishing you all the very best

Oh, OP, I am so sorry you were faced with such a shock and big worry at your scan.

The waiting and uncertainty is terrible.

I did have news of an anomaly at the 20 week scan, and further ‘soft markers’ for non viable conditions.
And then the appointment with the specialist was far more reassuring.

The anomaly (congenital abnormality) was confirmed, but so was the range of constructive options. Which have worked out well, and my child has grown up with a better life than that proclaimed at the scan.

I have no experience in heart conditions, but send a hand hold until you see the specialist.

Such a shock, so sorry. But no-one can advise you on here until you know what the actual issue is. Please come back and update your thread after tomorrow when you have the information.
In the meantime we can offer a handhold, as I imagine the wait will be agonising
You have had a huge shock and need time to process.

My heart goes out to you OP. We're still not at the end of our journey, but we're much further along.

Like you, we received devastating news at the anomaly scan and ended up being referred to a Fetal cardiologist. Genuinely the most terrifying ordeal and I really understand how you must be feeling. However, as the poster above stated, once speaking to the specialist, we had a full diagnosis and a range of options, far more positive than we were first led to believe.

Absolutely nothing anyone can say will make this time better but please be kind to yourself. Cry when you need to and don't be afraid to just be with your feelings. It's absolutely heart wrenching, but try to hold on to the hope that a specialist will be able to give you a much fuller picture.

I'm now 7months in to my pregnancy - lots of appointments. Lots of scans and constant worry. But you know, there is hope. Stay strong and thinking of you.

Thank you, I know I don't have the information to get much more advice than that but my heads just been all over the place, reading forum after forum and felt I had to get it off my chest. The frustrating thing is I was only up 2 weeks ago when I was 18 weeks, nothing concerning was said then, I even heard her heart beating at 144bpm. So it really did come as a shock. I know things can be missed in scans but I really didn't think I would be told something so serious within the space of 2 weeks. The most heartbreaking thing is I started to feel her move the last week. I just don't want to let go of her 💔

@littlebutterfly185

My heart goes out to you OP. We're still not at the end of our journey, but we're much further along.

Like you, we received devastating news at the anomaly scan and ended up being referred to a Fetal cardiologist. Genuinely the most terrifying ordeal and I really understand how you must be feeling. However, as the poster above stated, once speaking to the specialist, we had a full diagnosis and a range of options, far more positive than we were first led to believe.

Absolutely nothing anyone can say will make this time better but please be kind to yourself. Cry when you need to and don't be afraid to just be with your feelings. It's absolutely heart wrenching, but try to hold on to the hope that a specialist will be able to give you a much fuller picture.

I'm now 7months in to my pregnancy - lots of appointments. Lots of scans and constant worry. But you know, there is hope. Stay strong and thinking of you.

Sorry you are going through this ❤, what was your babys diagnosis?x

Really feel for you op

With DC1 we had anomalies found at the 20 week scan - like you I'd felt her first kicks just a few days before so assumed she was happy and healthy. Came as a big shock. These weren't heart problems but kidney and bowel ones.

Straight after the scan the treatment was shocking if I'm honest, basically pressure to consent to an amniocentesis leading to termination. The wait for the fetal medicine appointment was awful, I'v never cried so much in my life.
Fetal medicine were absolutely amazing though, they really explain everything in detail and so much more compassionate in my experience. We weren't forced into the amnio but very closely monitored by fetal med including detailed heart scans. Thankfully DC1 was born with no genetic conditions and the bowel and kidney issues had resolved themselves to a point where no treatment was needed.

So glad everything was resolved for you. I've heard great things about this fetal medicine unit, apparently one of the best in the UK so I'm praying for good news 🤞🏼.

Yes I've been waiting since Monday, we were meant to go the next day but the best cardiologist won't be there until tomorrow so I'm glad we are seeing the best of the best. It's been hard, I've basically shut myself off from the outside world, not talking to anyone at all (apart from my mum on the phone and my partner obviously). Just wanting it to be a dream 😥 and not be reality!x

We found bowel issues on a scan at 28 weeks. We went to fetal medicine and they were great! My DD had a condition that required surgery on her bowel at 6 days old and she recovered amazingly, she’s now 3 with no issues. They also found a hole in her heart when she was born that didn’t show on scans and she had surgery at 7 months. She was in hospital for only 6 days and she recovered brilliantly. Again she now has no issues with her heart. Just ask loads of questions, don’t feel pressured, you have the right to any decision you decide to make. Ask other parents as well about any condition, abnormality etc that baby might have rather than google, google is not your friend here! Sending lots of love

@Toomanykidsandcats

I said to my partner that in a way I'm glad we couldn't be seen until Thursday because it's given me time to prepare questions etc. I think if I went the next day after being told the bad news my head would of still been in a daze. Even though the wait is agonising I think it's helped in that sense.

I'm 99.9% sure that she will need an operation when she is born, I could even see the heart didn't look normal when it was beating on the scan, so I have been reading the tiny tickers website which has some amazing stories. Obviously it's hard for me to compare right now until I know 1. The defect she has and 2. If it is definitely fixable and 3. There is nothing else wrong with her that might have been missed.

Do you think they will still suggest an amnio even though my bloods came back low risk for DS?

Hi OP
Sorry to hear this. Been there before with an un treatable brain malformation, which sadly ended in termination.
Doesn't mean that your situation will though. Cardiac surgery can do some amazing things.
unfortunately the 20 week anomaly scan can pick up serious issues, hearing heart beats at midwife appointment doesn't let us know what's going on inside the body in detail. It can be such a shock so do whatever you need to feel better. Good luck with your appointment tomorrow. You might find it useful to look at the antenatal tests forum or the ARC charity website.
Take care x

@Toomanykidsandcats and I'm so glad your little one has recovered so well ❤ it's amazing some of the stories I have read. They really are fighters x

@fourthtimelycky

Thank you so much ❤. It was an ultrasound with my consultant I had 2 weeks ago where I heard and seen the heartbeat. He checked her over too including her hands, feet and measured her thigh bone but obviously this was missed. I do know they could probably see more at just over 20 weeks than they can at 18 and a half weeks but still came as a shock 💔 x

Hi OP. If you left your appointment not feeling as of they told you very much or that you couldn't take in what they were saying, it's okay to phone the hospital and ask for someone to talk you through it on the phone, so you are better prepared for your next appointment. Hospitals have patient liaison staff who might be a good place to start.

[quote No1worrier]@fourthtimelycky

Thank you so much ❤. It was an ultrasound with my consultant I had 2 weeks ago where I heard and seen the heartbeat. He checked her over too including her hands, feet and measured her thigh bone but obviously this was missed. I do know they could probably see more at just over 20 weeks than they can at 18 and a half weeks but still came as a shock 💔 x[/quote]
Oh sorry for my misunderstanding.

You will be in good hands tomorrow at fetal cardiologists, they will be thorough. In my experience fetal medicine doctors are very straightforward, yet sensitive. Try not to google too much in mean time (easier said that done, i know)

Been there, done that, bought the t-shirt, twice- consecutive pregnancies, same diagnoses both times (a different issue than your baby's heart one but the pain and anxiety is one I can completely and utterly relate to, OP). I am so sad and so sorry that you have found yourself in this awful place.
Never give up hope. The consultant is an expert and a guide but the horse's mouth here will be the cardiac consultant who will the oracle you can completely put your trust in. Best of luck to you for tomorrow. I hope the cardiologist can deliver some good news for the best and happiest outcome of all. I've known a few children with significant heart defects at birth. Yes, they've spent their first hours on the planet in a theater and yes, surgeries can be a recurrent theme in their lives in the early years, but the ones that I know are all 8+ years old (some teens now too) who came into the world with the odds stacked against them and they're doing really, really well, living happy, healthy lives. May this be the case for your blessed little baby.

ARC was mentioned above and yes, it is an excellent site with an amazingly supportive forum. It was a total lifeline for me. But the ARC forum is only for mothers who have terminated their pregnancies for medical reasons, just to let you know.

who will BE the oracle you can completely put your trust in.

That's how my post above was meant to read.

Our baby has a hole in the heart & the location of the heart is in a different place to where it should be. May or may not require surgery once born. Honestly, speaking to a specialist and being under their care has been remarkable & I really hope they are able to explain things fully for you. We did opt for an amniocentesis even though everything was low risk at 12 weeks. We were not forced into this decision at all and no judgement passed. It was simply offered and spoken about in detail. Thankfully, everything came back with in the normal range and it just meant we had more information prior to birth x

If you are on Facebook please join this group, it is very supportive and informative and we have had several members who have received bad news at 20 week scan www.facebook.com/groups/108795909224199

A friend of mine was told the same at her 20 week scan. Her baby needed heart surgery shortly after delivery but is now a healthy 10yo.

Not knowing and waiting was worse for me personally. Once we knew about her bowel condition and had a plan in place although obviously still very worried I felt calmer. We were offered an amnio as her bowel condition is often seen in babies with Down Syndrome. We declined on the basis I was having twins which made it very risky. We had chosen not to have the screening earlier as well, again due to twin risks and if one twin came back with a higher chance they wouldn’t have known which twin it was necessarily. The fetal medicine consultant presented us with all options in a very balanced unbiased way and accepted our decision for no testing completely. Heart conditions could be a result of lots of genetic differences or just how your baby has developed so they may offer an amnio to check other things, but it’s completely up to you how you decide to proceed! Our DD does have Down Syndrome but lots of babies with heart conditions have no other issues at all.

Oh op I'm so sorry you have this worrying news. I don't have any personal experience of this but a girl in my school was born with her heart back to front and the Chambers in the wrong places. She had to have a couple of operations when she was a baby but she is healthy adult now. With technology and advanced medical procedures there is alot of hope. 💐

Thank you everyone, so glad I joined this forum today to post this, it has made feel a wee bit better already 💗. Knowing there are so many people who has went through similar. Just one more sleepless night then we will find out whats going on with our little girl. Please keep your fingers and toes crossed for me 🤞🏼❤ x

My eldest DS was born with several congenital heart defects. He was not diagnosed until the day after he was born. He had his first open heart surgery at 4 days old. He is now a ridiculously tall and very healthy boy. Many heart defects can be successfully corrected.

If I can help in any way please ask away. I am sending you and your lovely baby lots of love and positivity.

@Cormoransjacket

Some stories I hear are amazing! I pray it's just her heart but I can't see anything else is wrong as I have been scanned by a consultant since I was 14 weeks and every time he has said everything looks okay and she is growing consistently. Surely he couldn't have missed anything else that is so serious x