Heart issues at 20 week scan

(31 Posts)
TJ17 Sat 18-Apr-20 18:25:39

Hi all

Just wondering if anyone else is or has been in the same position.
Unfortunately during my routine 20 week scan on Thursday the sonographer picked up a possible issue with my baby's heart. I wasn't expecting anything to be wrong having had no issues up til this point and a straightforward previous pregnancy. I have a medicinal scan booked on Monday with a consultant to investigate further but just wondering if anyone can make light of my report notes or offer any reassurances from your experiences? I know I should just wait til Monday but I'm not sleeping I'm so worried about it and just need some more information. Will my baby live? How serious is it? What might she have to go through if and when born sad

OP’s posts: |
TJ17 Sat 18-Apr-20 18:28:05

Not sure if it helps to add all else looked fine and baby is growing as expected

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Wolfgirrl Sat 18-Apr-20 20:25:32

I'm sorry you're going through this, I don't have any experience but hopefully someone will be along soon who does flowers

TJ17 Sun 19-Apr-20 10:11:27

Thank you, means a lot thanks

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Ivfmommy2b Sun 19-Apr-20 21:39:26

@TJ17 hi. I have a 4 month old baby who at the 20 week scan an abnormality was picked up with her heart. It wasn’t the same as what your report says, however it was still written scarily & I worried so so much. She has a right aortic arch, we had scans by the fetal medicine team, it was such a worrying time. She doesn’t have any issues as yet, this may come when she starts solids. But sometimes these abnormalities are classed as a variant of normal. We had an amniocentesis also as the RAA can be linked to chromosome issues, but thankfully all was clear. Hope you get some clarity soon. X

TJ17 Mon 20-Apr-20 07:09:48

Thanks @ivfmommy2b that's reassuring. I've had all sorts of awful things running through my head and it's been driving me crazy. I am such an over thinker. I have my scan with the consultant today praying we get answers, and good ones x

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Ivfmommy2b Mon 20-Apr-20 07:19:30

@TJ17 oh I am a terrible over thinker. It was literally the hardest couple of weeks of my life. I did also worry for the rest of my pregnancy, but this did get easier. They scanned her heart last month & at the moment as she has no symptoms, they don’t need to do anything. But she could need heart surgery. Praying she doesn’t need it. Good luck today, post an update when you can. Xx


goldie04 Mon 20-Apr-20 07:24:46

Hi I'm sorry you're having to go through this. Please rest assured that your baby will be in very safe hands when they are born. My DS5 has pulmonary atresia with ventricular septal defect and we found this out the day after he was born. In a way you are lucky to know now so you can prepare yourselves and there will be extra help at the birth. My DS is the most energetic child and his heart doesn't hold him back at all! Just by looking at him you would never know he has a heart condition. He's had 2 heart surgeries so far but we're now at a point where he won't need any for another 10+ years. I know it's hard not to worry. Heart kids are amazing, after my DS last surgery he was home after 4 day's. As you know now that baby has a problem you may be induced and possibly transferred to a cardiac hospital (alder hey, Leeds, great ormond street etc depends where you are in the country). But like I say it's good that the medical staff are aware now so baby gets the best start 💜

TJ17 Mon 20-Apr-20 07:50:14

Thanks - you are right it is always good to know as early as possible so that the right care can be given smile that is an advantage. Just takes the shine away from the pregnancy a little bit as now I'm just worried instead of excited sad as long as I get the all clear that she will still be born and likely to survive I'll be much better I think. Up until now we've been talking about baby to our 2 and a half year old and the last few days I've been too worried to mention her incase he never meets her. I know I shouldn't think like that but he's already lost out on so many things we've promised recently like holidays and day trips due to lockdown and I think oh god not another thing that we've told him will happen that now won't confused I will post an update later when I know more.

Much love to you and your amazing strong babies star

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YinMnBlue Mon 20-Apr-20 08:27:07

The very best of luck at your scan this morning OP. I went through one of those weekends of all consuming worry over a different issue (but included ‘echogenic loci’ in the heart which turned out to be completely irrelevant).

My friend’s Dd actually had surgery in the uterus before birth, and is now a healthy young woman about to go to Medical School.

Thinking of you this morning.

TJ17 Mon 20-Apr-20 19:15:33

Hello all

Seen the consultant this afternoon but didn't get much more information really other than confirmation that there is definitely an anomaly. The one positive is she said it looks like whatever it is should be treatable.
I am now awaiting an appointment with a fetal cardiologist who will hopefully be able to give a more accurate diagnosis!
She will probably need surgery after birth which is never nice to know but I'm just so grateful that something can be done to help her. All I wanted to hear was that it was treatable so I'm feeling more hopeful now.
Again all else seemed fine, it's literally just her heart. (The 3 vessels more specifically)
Will update further when I know more! Thanks again to everyone for well wishes and encouraging stories ❤️

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YinMnBlue Tue 21-Apr-20 17:46:39

Another step forwards, OP. You are getting the right advice, and it does sound as if they can fix the problem.
My first baby was born with an anomaly - not heart - and had surgery starting at about 11m. (successful, and not as traumatic in reality as I feared in advance). I was really glad that it had been diagnosed before birth, was able to do some research, we had met the consultant who did the surgery when I was 22 weeks pg, that consultant was on the ward the day after the birth checking up.

I was glad because I knew we were getting the best of help by the time my baby was born, and also that the condition did not come as a shock and cause upset in our special first few hours, and we could approach it calmly.

During our various surgeries I spent time with many parents whose babies had really complicated and serious anomalies involving organs, and it was miraculous to see what was done and how well the babies responded.

All fingers crossed for you, OP.

TJ17 Wed 22-Apr-20 08:11:16

Thank you for your post.
I was given a last minute cancellation appointment yesterday with a fetal cardiologist and the good news is we got a diagnosis.
It's called Tetralogy of Fallot and is fixable with surgery. She'll probably need one soon after birth and then a more permanent fix at 5-6 months old and then a few more over her lifetime but she should otherwise live a normal active life.

That's the good news. The news I am struggling with is that 30% of babies with this heart condition have it as part of a chromosome disorder called DiGeorge syndrome. I've looked this up and it doesn't sound the nicest. I've been offered an amniocentesis which carries a 1% risk of miscarriage so I'm really unsure whether to have it and then I don't know what I'd do with the information when I got it if it wasn't what I wanted to hear 😭 so many difficult decisions to be made. My husband says if I want the test to just have it but it's not such an easy decision. I just feel like if that came back clear then at least that's one less thing to worry about and we can just focus on the heart surgery! But if it doesn't come back clear...then what confused

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Ivfmommy2b Wed 22-Apr-20 08:33:01

@TJ17 my baby’s heart condition also had the associated risk of di George, I did have the amnio & it was all clear. I definitely couldn’t have coped not knowing. X

TJ17 Wed 22-Apr-20 11:59:30

Oh wow thank you. I have been given another appointment tomorrow, not sure what for but they said I could have the test whilst I'm there. Such a relief hearing that you had the all clear. That's all I can hope for at this stage 🙏🏼🙏🏼

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Sexnotgender Wed 22-Apr-20 12:02:08

My stroppy grumpy 16 year old has tertralogy of fallot. Surgery when she was about 2 and we’re waiting on an MRI as she will need a valve replaced soon.

cocop0pz Wed 22-Apr-20 14:13:08

@TJ17 so sorry you are going through this! I was in your shoes last year and I know the uncertainties eat at you as a pregnant woman. It’s hard to be excited when you know your baby has a rough start to life at the end of this. I just reminded myself during this time that.. I’m still having a baby and that itself was something worth being excited about and that regardless of anything, I’d love this baby with everything I had.

Like you, a heart abnormally was found at the 20 week scan which really was a blessing in disguise. It’s best for the baby’s sake to know now (rather than at birth!) and of course you’ll be able to somewhat prepare yourself for what’s to come.

Our little boy (Kylo) was born via planned c-section on the 4th December 2019 - he had prediagnosed Coarctation of the aorta and a hypoplastic aortic arch. There was also a small ASD and VSD. The VSD closed itself during my last few months of pregnancy.

When he was born, I got to give him a quick kiss before they whisked him off to the nursery for further assessment. My partner and I had planned for him to go with Kylo so he was always with him. It was important for me to recover at this point so I could be in my best health for Kylo.

Kylo was at the womans hospital for 5 hours before being transferred to the children’s hospital (pretty much down the street!) his dad went with him. Unfortunately I didn’t get to see him before he went but I was getting updates and pictures thankfully from my partner smile

The next day I got to go see Kylo in the NICU for 5-6hrs which was great - there were a lot of wires and cords, monitors etc. we had already had a tour of the NICU while I was pregnant so I kinda knew what to expect already.. he was beautiful regardless of everything being attached to him.

I finally got transferred to the children’s hospital on day 3 and was walkable distance from Kylo.

On day 6 he got his surgery. Nothing can prepare you for the moment you watch your little baby being wheeled in for surgery. That is and will always be the hardest thing I’ve ever faced. Thankfully we got updates during the surgery and it was a success! Kylo was in PICU for 8.5 days after surgery. Recovery is a rocky road. We learnt to celebrate lightly as day 2&3 appeared things were going really well just for things to go a bit backwards on day 4 & 5.

Kylo was discharged on Christmas morning and got to meet his big sister that day!

Fast forward to now - he is sound asleep next to me and you wouldn’t even know what he’s been through just by looking at him. He is almost 5 months old and thriving!!

Best of luck with everything! Please feel free to ask anything and also join some heart groups on FB - I found this to be incredibly helpful during my pregnancy smile

TJ17 Wed 22-Apr-20 14:26:11

Thank you so much @cocop0pz it's so nice to hear about the reality and know that some day this might not feel so bad! Think the timing sucks at the moment too and doesn't help that I can't see friends and family and just have a coffee and try and live a bit normally! There's too much time to dwell on things right now which I'm prone to at the best of times!
So glad all went well for your little one smile that's the best news x

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ILoveMaltesersIDo Wed 22-Apr-20 15:16:29

I have a very nearly 5 year old with ToF, it was an incredibly worrying couple of weeks between the anomaly being found to getting the diagnosis but once we had the diagnosis and met a cardiac liaison nurse who talked us through it all I felt completely hopeful. Then he arrived prematurely and with another, undetected, defect which required immediate surgical intervention - his heart was way down the list of problems at that point! But here we are, almost 5 years on, and you would never know to look at him. He had his heart repair at 9 months old, recovered and was discharged much quicker than we were told to expect, and he now has annual cardiology check ups but leads a very normal life.

As mentioned above, there are loads of support groups and charities out there - I wish I had known that back then!

TJ17 Fri 01-May-20 18:06:08

Hi all

Just to update I had the amnio 8 days ago so just waiting on the results now and it has felt like forever. Had the fast results back within 2 days (Downs, Edwards & Patau) and had the all clear but it's the full array I need in order to find out if she has DiGeorge syndrome which is the most commonly associated one with her heart issue. They said the results for these tests would probably be about 2 weeks.

Some days I'm positive and think it will all be fine, others days I'm wracked with worry and can't stop crying as we have made the decision to terminate if she does have it. We've researched it thoroughly and just don't think it would be something we could cope with, especially as we already have a 2 and a half year old. It would affect his life too much due to the low immune system and mental health problems often seen with the syndrome and I just don't think it would be fair on him.

We want this baby girl so much and I feel her kicking every day! Just praying the results are clear and we can go back to bonding with her again and looking forward to her birth. I feel like my pregnancy is on "pause" at the moment which is the most awful and strange thing I've ever experienced and no family should ever have to feel this way.

Hopefully we are over half way to finding out 😬🙏🏼

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jmm499 Fri 01-May-20 19:03:14

@TJ17 Sending you so much love ❤️ I’m really sorry to read of what you’re going through. I hope the full array comes back very soon and it’s the best news possible 🙏🏻

I can really relate to how it feels when the pregnancy is ‘on pause’. We got the news at our 12 week scan that with the increased NT measurement we had there was a 30% chance of a chromosomal abnormality. Like you we have our son to consider and the impact on his life too. It was a very difficult few weeks (we couldn’t have a CVS so needed to wait until 16 weeks for an amnio). Some days I felt positive and others I felt despair. It was so difficult to go through and I’m not sure I’ve fully recovered from the trauma we went through. The results were clear for us and I’m now 30 weeks but still feel anxious and really hope everything will be ok when the baby arrives 🙏🏻 I really really hope you get the best news ❤️

Thinking of you and sending lots of strength xxx

TJ17 Fri 01-May-20 19:59:08

@jmm499 wow that is a lot of waiting and agonising! I'm so sorry you went through that but lovely to hear you had a happy ending 😊 hope the rest of your pregnancy goes smoothly.

I feel guilty to even consider termination and I know so many would say it's awful but like you said we have to think of our current children and our circumstances too. I'm writing this in the hope that it takes away the shame for anyone else facing such an awful decision too. I do worry I'll be judged and would hate for anyone else to feel that way as it's a hugely personal decision that nobody else should have a say on.
Praying it doesn't come to that anyway!

Once we have the results we can finally start to process the fact she has a heart defect and prepare ourselves for all those terrifying thoughts and feelings when she's here. But at the moment it's completely overshadowed by the amnio results!

Sending love back to you! Very therapeutic to write it all down so thanks for listening smile

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jmm499 Fri 01-May-20 21:45:05

@TJ17 thank you 😘

You are absolutely right - there is such guilt and shame sadly 😔 I remember my mum saying to me that I could ‘just’ say I had a late miscarriage which upset me so much as I felt so judged by her when she said that. I said to her ‘there would be nothing selfish about this decision if that’s the one we have to make as I will live with a broken heart forever’. And it’s so sad as like you say, it’s the most impossible decision. Utter turmoil. I have supported friends through tfmr but until you’re potentially facing it yourself, you just can’t imagine it 😢

However, I really really hope it won’t be something you have to face - I have everything crossed for you. The odds are in your favour and it’s much more likely that your little girl doesn’t have the syndrome with her heart condition 🙏🏻

I hope you manage to enjoy some of the weekend - I found some meditation helped to calm my racing thoughts and worries in my more difficult moments xxx

TJ17 Fri 01-May-20 21:47:48

@jmm499 thanks so much. We are totally on the same page 😘
I will let you know when the results come!

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jmm499 Fri 01-May-20 21:56:20

@TJ17 😘😘😘
Yes please do, I’m thinking of you! Xx

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