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Original poster

Possible heart defect at 26 week scan

34 replies

FrogSong · 05/09/2015 12:06

During the week we got the scary news that our baby might have a heart defect. The scan showed that one valve could be smaller/bigger than the other. The Consultant is referring us to a fetal cardiology specialist in Dublin (we live 3 hours away) to make sure and see where we go from there. We're now waiting on an appointment. Nothing showed up in the anatomy scan a few weeks ago so we thought everything was okay, now it feels like our world has been turned upside down. Just so scared as to what this could mean. Has anyone been in a similar situation? So worried Sad

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hankyspanky · 05/09/2015 12:14

Didn't want to just read and run.

My DD had this with my DGD at her scan and when we saw the cardiologist for follow up appointments we were surprised to be told how common this can be.

I know its easier said than done but, please try and not worry too much. My DGD is 3 this month and has had no complications.

Flowers
Original poster
FrogSong · 05/09/2015 12:22

Thank you hankyspanky, I appreciate your post. Glad your DGD is doing well x

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christmasbean · 05/09/2015 14:00

I'm in that situation too at 24 weeks and have seen the fetal cardiology specialist this week. I completely understand that it's a devastating time. All they could do at the appointment was confirm what the sonographer had picked up and will scan again at 30 weeks to see how the valves develop. I wish you all the best at the appointment and just take things one day at a time and stay away from Dr Google x

Original poster
FrogSong · 05/09/2015 14:27

Thanks christmasbean. Is there a chance the valves could still develop normally at this stage? Wishing you all the best too that you get good news at your next scan x

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Hopefullyhoping · 05/09/2015 14:31

Our situation is similar but different in that several abnormalities, including a heart problem were picked up at our 20 week scan. We are waiting to see a cardiac specialist next week. Just wanted to offer you some support really.

mrschatty · 05/09/2015 14:37

Hi- simmilar situation here. 20w scan picked up that one side of babies heart was smaller than should be. Was referred to fetal cardiologist luckily seen him next day. He advised heart is correct size but the muscle around part of heart called moderator muscle is too big which can potentially cause obstruction. Unfortunately we're now on watch and wait until 22nd of sept to see cardiologist again and see if baby needs an op on birth Sad I share your worry but this seems more common than you'd think. Flowers

christmasbean · 05/09/2015 14:39

Hi Frogsong. Unfortunately the specialist advised that, for our diagnosis, most situations either stay the same (this is our end game now) or get worse. Surgery is inevitable, the type of surgery just depends on the way things progress and we are obviously hoping for the 'better' type of surgery x

Original poster
FrogSong · 05/09/2015 14:54

Thanks ladies. I hope we all have positive outcomes. It's a worrying time.

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sherbertlemon17 · 05/09/2015 15:40

Also in a similar situation here. It really is shit scary! Our little one has a hole in the heart which was picked up at the 20 week scan... We've had a cardio scan and seen a consultant already. This week we have our 2nd scan with the cardiologist from Great Ormand Street. Hopefully for us, bubba won't need an op and it could even close up on its own. It's such a waiting game! Like you've all said, I can't believe how common heart defects seem to be!

Just so you know FrogSong, when you have your cardio scan, it will take a while and will be completely focussed on that little heart, structurally and functionally.

Fingers crossed everyone Flowers

Original poster
FrogSong · 05/09/2015 16:03

Thanks sherbertlemon17, the very best of luck to you and your little one too x

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loismustdieatyahoodotcom · 06/09/2015 10:23

Hi just thought i would post to say my DC had congenital heart disease, a hole in the hole and coarctation, and he's fine now. Also the treatment and monitoring in the nhs was amazing. Keeping positive was hard for me but sending you all good luck!

Original poster
FrogSong · 06/09/2015 12:46

Thanks so much loismustdieatyahoo.com.

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Ebb · 06/09/2015 18:28

I understand how scared you must be feeling right now. The not knowing and the what ifs are almost the hardest part. The sonographer picked up some issues with the blood flow in the heart at my 20wk scan. Waiting to see the fetal cardiologist was awful as you can't help thinking the worst. The cardiologist scanned me and said everything was fine which was a huge relief.

However DS was diagnosed with aortic stenosis at 9mths. I think at the 20wk scan he was lying at a really odd angle for the sonographer so she did see something which the cardiologist missed as DS was lying in a 'good' position. So far he's not required any treatment. He is monitored annually and will eventually need a procedure to stretch his valve and the valve will need to be replaced at some stage in the future. He's a normal 7yo.

The things they can do with the heart now is amazing. The children's heart federation and the BHF are good places to get information from. I hope your next scan brings some positive news. Flowers

Orangeisthenewbanana · 06/09/2015 18:34

Sorry you're having to go through this OP. Just to reassure you my friend's little boy had a problem with his heart valves which wasn't picked up until he was over 1. He had surgery at GOSH last year and did amazingly well. He's 3 now, and you'd never know by looking at him tearing around that he had the problem at all! Hope you get positive info from the specialist Flowers

Original poster
FrogSong · 06/09/2015 19:23

Thank you ladies. You've all been a huge comfort, it really has helped a lot. Hopefully our news will be positive or at least not the worst, that's all I can hope for. Your posts have helped so much, thank you all x

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Original poster
FrogSong · 06/09/2015 22:12

Ebb from my very limited information (one valve looking smaller than the other) it sounds like what your little boy was diagnosed with. Again, I won't know if it is that or if there's anything at all until I see the Cardiology team....but even if they give me the all clear I think at the back of my mind I'll wonder if the sonographer was right in the first place like in your case. Delighted your son is doing great Smile

The waiting is awful. Hopefully I'll get seen this week.

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Twoseventhsaweasley · 06/09/2015 22:37

Hello,
Our eldest was born with several heart defects. His were diagnosed when he was about 24 hours old as nothing was picked up at his 20 week scan.

CHD is scary, but the doctors, nurses and surgeons are truly amazing. I wanted to say good luck. I hope everything goes as well as it possibly can for you and your baby.

Original poster
FrogSong · 07/09/2015 07:10

Thank you Twoseventhsaweasley. I hope your son is doing really well now.

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docmcstuffins1 · 07/09/2015 11:10

My step son was born with a hole in his heart and co-arctation (narrowing) of the aorta. The narrowing was treated by an operation as a baby, he's had yearly scans with his cardiologist and the hole eventually closed itself. He's now a strapping healthy 18 year old!

Original poster
FrogSong · 07/09/2015 11:46

Great to hear docmcstuffins1, thank you. It helps a lot to hear positive stories. It's hard to stay away from Google as much as I try not to look. Appointment with a team of specialists made for this Thursday now so fingers crossed.

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Twoseventhsaweasley · 07/09/2015 13:03

He is a fabulous big lad of six now. Thank you for asking.

I realise that this is the last thing you are thinking about right now, but we were given lots of extra scans for our second baby who was born with a completely healthy heart.

Good luck for Thursday. I hope that the doctors can help to make everything clearer.

When our boy was tiny there was a very helpful forum specifically for the families of children with heart conditions called Heartline.

Original poster
FrogSong · 07/09/2015 13:36

Thanks for that, I will take a look. Great to hear your second baby had no health issues and your little boy is doing great.

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Ebb · 07/09/2015 13:51

Ignorance was definitely bliss in the terms of enjoying the rest of my first pregnancy after getting the all clear. I was a lot more stressed in my 2nd pregnancy with DD even though I had a fetal echo at 16wks and got the all clear. She is fine.

Good luck with your appointment on Thursday. Like I said, they can do amazing things with the heart. Once we had a diagnose for DS, we felt more relaxed as we knew what we were dealing with and could research it a bit more. The not knowing and waiting is the hardest part.

Original poster
FrogSong · 07/09/2015 14:20

Thanks Ebb x

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Original poster
FrogSong · 10/09/2015 23:23

Just want to update you all. Today was the hardest day of my life but Thank God we got wonderful news. Everything looks okay. The specialists were very thorough. She sees where the sonographer is coming from and said he is amazing to pick up what he did but that it's very subtle and she isn't at all concerned. Everything was checked and checked again. She said it's very rare that she gets to give good news like that so we feel so unbelievably blessed and fortunate. I really didn't expect that today, I thought even if it was minor that there would be something. The relief is overwhelming. I will never forget this day.

I just want to thank you all for your kind words and I wish each of your children all the best. I hope they will all continue to do great. I have so much empathy and respect for you all and what you have and are going through.

DH and I are going to do something for the hospital here, we feel so fortunate and lucky and it's the least we can do. Thank you all again.

A very relieved and grateful Mammy to be Flowers

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