Heart condition repairable

[Sunshine1982flowers211111]

Hey, is there anyone on here who has had a heart condition (which can be repaired at birth) diagnosed at 20 weeks. I feel hopeful but also it is a worrying time and I wondered if anyone was in a similar position or had experienced this. I suppose I just need some support. Thank you :) x

I hope someone can offer you some reassurance OP 💐

It's great that they can spot these things but must also be a worry even if it's something that is totally treatable.

My daughter was diagnosed with a right aortic arch at 20 weeks. We did not know how that may affect her. So was a big if a wait & see scenario. She’s now 16 months & I’ve actually contacted the children’s hospital as I’ve noticed some changes in her. They are seeing her next week. What condition does your baby have? X

My daughter's heart condition was diagnosed a month before she was born and she had heart surgery when she was a week old. We've had no further complications and she's now 16 yrs old and we are so proud of her. It was a very surreal experience but the hospital team were absolutely amazing. I hope everything goes well for you.

It’s called AVSD and apparently means holes they need to close up with a surgery after birth. I can just about cope with that, it’s the fact I still have to get through 4 months of pregnancy not knowing how that will all go. I’d never even heard of this. No one in either side has this and I went to the 20 week scan thinking it would be like the one for my first daughter which went smoothly. I can feel baby kicking and I am just praying she is going to be okay xx

@whatever45 that’s such good news to hear your daughter is so well now. What was the heart condition if you don’t mind me asking? How did you feel while still pregnant? I’m sorry I think I just need to speak to other mums who have experienced the same as that would help xx

My stepmother was born with a hole in her heart, it was repaired shortly after birth. She is now nearly 60 years old, has studied to a Masters level, had a successful career and carried a child. In the last 5 years she has had a stent fitted but lives a happy, healthy life otherwise.

Surgery for congenital heart defects is really advanced now. If they are telling you they can fix it then I would be very hopeful in your shoes. One of my kids has a CHD that hasn't required intervention so far. I do know it's a huge worry but your baby will be well looked after.

My daughter had transposition of the great arteries and multiple VSD. Thankfully it's a condition that could be treated in one surgery at birth. Some of the holes closed naturally but one needed a patch to repair it.
I only found out a month before she was born which was a complete shock but allowed us time to prepare the practicalities of her being born away from home. I was reassured that all the time she was in the womb she was fine. She's a very special girl and we are so thankful to have her.

Thank you So very much to everyone who has replied. It’s meant so much to me as it is lovely knowing that your little ones are happy and healthy now :) and it makes me feel less alone in going through this. I love her so much already & I can feel her little kicks. I know I need to stay positive for her. They have said the one operation can help. It’s the next 4 months of pregnancy and the birth which is making me more anxious than her operation to be honest. Did any doctor tell you about hydrops as something which could happen? It’s not been mentioned to me but I have stupidly been doing loads of googling and I’m not a doctor at all so I am likely making it worse for myself. Thanks for the support during this tricky time xx

@whatever45 your story seems similar to mine. Did the doctors say that while she was in the womb she’d be ok? I guess I’m
Just trying to find some strength to get through the rest of the pregnancy.

Yes with her condition it would only cause her a problem after birth. I don't know about your situation of course but don't be afraid to ask your dr and midwife lots of questions - much better than looking online. Hope it all goes well.

Sunshine1982 how are you getting on. What abnormality does your baby's heart have?

I have a child with chd who had OH surgery two weeks after birth and is the healthiest looking child you can imagine.

@Hoolahoophop hey x it’s so kind of you to check in thank you so much :) I’m so pleased your child is happy and healthy and thank you for sharing that with me as every story like that gives me strength and hope. I’m 26 weeks now and feeling it! My bump feels heavy and I’m tired! My partner is being wonderfully supportive and we are just praying the heart condition stays stable. My greatest fear is that on the Oxford hospital specialist scan we have in July they will pick up something else or hydrops (I should stop googling I know) but it’s hard not to worry. I have good days and bad. I want my baby girl to be okay so much and it’s the hardest thing ive ever been through xx have a lovely weekend x

My DS2 had a heart condition diagnosed at 10 days old. He’s now 8 weeks old and thriving. Was so scary him having surgery but the doctors at GOSH are amazing.

Hi @RosieGirl27 thanks so much for letting me know that xx every positive story people tell me makes me feel better x I’m so pleased your son is now thriving :) such good news. Xx yes the doctors all seem brilliant and know what they’re doing. Xx

If you're ready for another happy story OP, my DS's heart condition was not diagnosed until he was 2 days old and starting to turn blue, it was transposition of the great arteries, he had open heart surgery at 8 days old, he has annual check ups now at 16 , he is a perfectly healthy, strapping six-footer now - plus head boy at his school (honestly didn't make that last bit up).

Wishing you all the best x

It’s called AVSD and apparently means holes they need to close up

The repair depends on the size of the 'hole', this used to be called, "a hole in the heart".

For most babies it isn't even an operation it is a procedure done under anesthetic but is really simple.

A cut is made to access an artery (or vein), usually in the groin and a thin plastic tube is fed into the artery up to the heart.

A folded device is fed up the tube and into the heart where it is placed through the hole, this is then opened at both sides. If you imagine putting two umbrellas together at the top with the handles facing away and then open both umbrellas this is the type of shape.

They won't know until birth how big the holes are, well not the top hole anyway. This is because babies do not breath before they are born so ALL babies have a hole in the heart, at birth a flap folds down due to the pressure from the blood, normally it covers the hole entirely and becomes part of the septum wall.

A hole in the bottom chamber might need an operation, but this is something that has been done for years and is fairly routine. It depends on the size but the same technique can be used.

Some people born before ultrasound have lived completely normal lives and the holes are only diagnosed when they go to hospital for something else.

I've seen a man in his 30s who had two holes in his heart and no valve on one side, it was discovered in his 30s and as he was in good health was just monitored.

Link to a Dr who does this, it is written for the lay person so no fancy medical terms.

www.drebabucardiologist.com/post/asd-device-closure

I know saying 'try not to worry' is ridiculous, you are a mum and it is your job to worry but try to enjoy your baby.

Thank you so very much to everyone who has written to me on here x it means a lot @KarenofSparta that’s so wonderful well done to your lovely boy for being head boy! The medical team are brilliant I know that we are in good hands and my partner and I are so very grateful for that xx

@sashh thank you for the medical information xx I can’t get my head around how incredible these surgeons are that can do this on an organ like the heart. So incredibly intelligent xx

They are all truly amazing. David Barron operated on DS. To me he's a saint 😇.

I know this is an old thread but have just found out at 29 weeks that our baby has Avsd and wondered how you and little one were doing?

@Probablybeingcrazy my eldest's situation wasn't quite the same - he had ASD with transposition of the great arteries (which a couple of other posters mentioned earlier in the thread). His ASD was actually enlarged when he was a day old to help with his TGA before that was surgically corrected at eight days, when his ASD was also closed. He's now six years old and you'd notice no difference from his classmates and friends. He has regular checkups and some mild leaks from a couple of heart valves, but the ASD has never caused any trouble at all.

Whereabouts are you, @Probablybeingcrazy? We were at Leicester and still go there for checkups, so I'm happy to help with any questions.

Sorry, please ignore my last two posts! Clearly not properly switched on this morning. I meant to comment on a post about P&O ferries!