Heart defect at 20 week scan

[lookatthemoon]

I had my anomaly scan today (almost 22 weeks). Really normal pregnancy so far and scan went really well up to a point. Everything measuring for dates, good heartbeat, lots of movement, organs all normal etc.

We got to the heart last (sonographer had trouble getting a good view earlier in the scan). Suddenly she told me she was worried. She couldn't see 4 heart chambers, definitely there is nothing separating the top two chambers and in addition to this she said it seemed like there were other 'complications'.

I am seeing a fetal medicine specialist on Tuesday morn. Sonographer obvs couldn't make a diagnosis but used lots of words like 'serious' and 'very worried'.

Does anyone have any hopeful stories for me? I'm realistic but just need to survive until Tuesday when I can find out exactly what is going on. Am just terrified that it will be so bad that the pregnancy won't be viable. So hard because baby looked so healthy otherwise and is still kicking away inside me.

Give me hope/comfort?

Thinking of you today lookatthemoon

Hope it's a good day for you OP 💐

Good luck today

Good luck for today

Lol at " feral cardioglost "

OP step away from Dr google.

OK so the sonographer couldn't see something, it doesn't mean it isn't there just that they can't see it.

Before a baby is born they all have a 'hole in the heart' this is because the lungs are not breathing and the oxygen in the blood stream is coming from you.

Sometimes this doesn't close after birth and is known as a patent frorman ovalea which is a kind of ASD (hole in the heart). IF this is the case then it is normally treated by a procedure in the cath lab where a tiny tube is put in to the baby's thigh, worked through to the heart and opens a sort of umbrella like device that closes the hole, the tube is then removed and baby is fine.

Now you are in the fortunate position to have scans, babies born in the 1960s were not. I have met an adult who had no division between the top two chambers, only a partial division in the bottom two chambers and a valve missing.

These days that would be flagged before birth. This man had lived until his 30s before it was detected at a routine appointment for something else. He decided not to have surgery as he felt fine.

I met him as part of my training (used to be a clinical physiologist working in cardiology).

I doubt very much this pregnancy is not viable. Your baby may be absolutely fine, your baby may need some medical procedures, even an operation. It is very rare that a heart defect alone makes a pregnancy non viable.

And of course good luck today.

Eden

Thank you for sharing, I'm sure it wasn't easy to do that.

Good luck for today.

Hi - I didn’t want to read and run. I will write more when I am on a computer.

I think your scan was yesterday? Thinking of you

Sorry - I see it’s today. I hope it’s good news.

Best of luck today OP

Best of luck.

The skill of sonographers, position of the baby and clarity of the machines can all affect the result. It is right the sonographer referred you to a fetal medicine specialist - at the very least they will have better machines and experienced sonographers with cardiologist on site. I was scanned about 20-30 times during my pregnancy and my dd too after she was born due to a heart defect. Even after she was born with the best doctors and machines, it still took another 4 months before they figured out what was wrong with her heart.

Hope it resolves sooner for you with a good outcome.

Good luck for today - I hope you receive positive news

Good luck for today. 🌼

Hi op...I've been in your situation and I k ow it sucks. Wanted to share my story so you see your not alone

At my 20w scan I could see straight away babies heart wasn't right. She never had a lower right pumping chamber (it seemed) we had to be re scanned by a fetal cardiologist and it was such a worrying time.
Every week I was being rescanned from 21-30w and every time they found out something more-
Tight pulmonary artery
Small right ventricle
Multiple holes (vsd) one was (is)significantly large
Excessive band of muscle around the heart

I open nor to have an amnio this was offered as there was a risk of genetic abnormalities with some of the things they could see
My dd was born at 38w 7lb10 and taken straight to NICU she looked gorgeous (still is!!)
Scans after birth showed all of the above as expected but no new issues
We had genetic testing and that was all normal too....so onto surgeries

We had the first surgery at 4mo this was keyhole done in Birmingham
Second keyhole was a year later followed by first open heart surgery at 18mo.

She is doing amazing honestly such a star and there is so much support out there. I've found multiple Facebook groups including one for parents whose children have surgery at Birmingham
We're from Manchester and it can sometimes feel like a lonely scary journey but somehow you find a strength

I used to sob my heart out leaving the fetal cardiology every week but I still enjoyed my pregnancy and I have an otherwise healthy smart funny cheeky little nearly 2 year old now

Pm me anytime it helps to talk xx

Thinking of you

Good luck today. X

Thanks so much for the lovely wishes everyone. So we do have a severe heart defect, baby will only spend a couple of hours with me after birth before being taken straight to NICU/cardiac unit. All going well, first surgery will be at 3 days, home after 3 weeks, second surgery at 3 - 6 months and the last at about 3 years. Ongoing monitoring thereafter.

Obviously it is horrible news that we are at the severe end of the spectrum but I was told that what we can aim for is a child who starts school with their peers and you could never tell by looking or talking to them that they had heart surgery. So, am hugely relieved that is a plausible outcome here and very grateful we have that to hope and aim for.

I knew from the sonographer's reaction that things were bad and so I was genuinely worried we were going to have an 'incompatible with life' outcome. We have a lot of (very!) scary bridges to cross but a realistic chance at a normal life.

Thanks again for all the support and people who shared their good and bad stories. It all helped! If anyone comes across this and is a similar situation; the best advice I received is that you need to have hope. I was properly prepared to receive catastrophic news but being able to keep some hope alive kept me sane.

Thanks again everyone x

I'm so glad that there's a good chance your beautiful baby will have a long, normal life with prospect of good health. Like you say, it could have been worse, and although you will face lots of challenging situations initially, you at least now know beforehand and can be prepared. Hugs and for you OP x

Glad you know what you are facing. Your positive attitude will serve you and your baby well. I know there are lots of trials ahead, but , as you say, where there is hope , things are so much better. xx

Hi OP

I'm sorry you've received this tough news but also glad you have a care plan in place.

Just wanted to share that a close friends' son also had serious end of spectrum heart detect. Not detected on scans. He had open heart surgery at 8 weeks and has never looked back in the years since. An astoundingly heathy child. The only way you would know he was a heart baby was by the tiny scar on his chest and the fact he has to see his cardiac surgeon once a year.

I hope everything goes really smoothly, all things considered. Get your support in place to help you get through this time. Xx

OP, there will be many precious moments as well as times of worry. My daughter was born with a heart defect and went through a lot of trouble and surgery as a baby, you'd never know now to look at her running around on the football pitch a perfectly healthy 7yo. The staff in paediatric cardiology are so dedicated and I wish you all possible joy with your new arrival.

There is not much that I can add, apart from being sorry that you are going through this.

My daughter was born with VSD (not picked up by scans). She is now an incredibly healthy 15 year old.

The care from the moment that it was picked up (next morning after her c-section birth) was exemplary. We were devastated, but totally supported by the medical staff.

Thinking of you.

OP, sorry about the news. Many heart defects are eminently fixable. My dd was whisked away from me at birth too - only they did not know whether she needed surgery right away or she could wait. She eventually had open heart surgery at 4 months and has never looked back since. It won't be easy but there is much hope for your baby. The doctors say it is much worse for the parents than it is for the baby. I know it is scant comfort but it is almost a blessing your baby has surgery before he/she is too little to fully comprehend. You won't believe it how quickly they bounce back after the surgery and sedation. Wishing you and your baby much strength and courage.

You sound very positive OP, I'm sorry the news wasn't as good as it could be but so pleased it wasn't worse case scenario.

FWIW I've just spent 10 weeks in neonatal including the intensive unit with DS, it was amazing how strong even the smallest babies were.

DS hasn't needed surgery (he was just very early) but he has come home on oxygen. We weren't expecting it and the appointments and monitoring and everything isn't easy but we are managing.

I will keep everything crossed for you and your baby.

OP

So sorry it isn't the best news. You seem to have quite a plan to go forward, wishing you, your family and of course the little one all the best.