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Potential heart condition Rss

Hi all,

I'm 24 weeks pregnant, due April 22. At our 12 week scan we got told we had a 1:70 risk of a chromosomal abnormality. This was mostly down to a nuchal measurement of 3.51. We had an amnio and after weeks of worry and anxiety were told she was fine.

The 20 week scan was normal and then the obstetrician got us to do a 24 week heart scan just to be totally sure all was ok. We were under the impression it was just a matter of ticking the boxes so were pretty shocked when they told us they couldn't see the septum dividing the top two chambers of her heart. So now we are waiting to see further specialist in wellington. After all that worry over the increased risk and the amnio it feels hard to be back in the worry mode.

I wondered if anyone else had any experience with congenital heart conditions and could share their experiences.

Thanks!
Tessa
I'm sorry to hear about the worries for your little girl - the team at Wellington is supposed to be very good. I have no experiences but wish you well and hope everything is ok - I am at risk of having babies with a heart defect so I can only imagine your worry.

hopefully someone will have some experience to share with you

all the best for your little one x

The wellington@heart team is also very supportive & easy to talk to.

Depending on the heart condition you might have to give birth in Auckland. If this is the case you'll get travel & accommodation assistance - talk to your local hospital's patient travel Administrator. Good luck smile

My beautiful baby boy wss born 18 July 2013

Unfortunately I completely understand what you are going through, we found out our beautiful daughter had a chromosomal abnormality at 16 weeks and had to have a genetic termination, after loads of waiting games. She was my first pregnancy so I didn't know what to expect.
There is no quick fix to this dreadful anxiety you are feeling except do what you need to to get through it, ie going out for the day, volunteer your time somewhere, sit at home and process all the possibilities.
When I spoke to a Dr about this he suggested to make a decision about what you would do with all possibilities and try to focus on something else- He had obviously never gone through this, although it did help when we got our bad news as we didn't then need to make a decision with the news only act on the decision that we had already made.
I feel for you, I remember my emotions were very raw, so if you have to let it out there are your friends and family and here to help you out.
Good luck I hope you get the wonderful news you are hoping for.
xx
Thanks for your responses.
We had the waiting to find out about the chromosomal abnormality at 15 weeks. That was excruciating, and Ike you Liney we had decided if there was an abnormality we would terminate. I have great admiration and respect for people who keep their baby after that news, but it wasn't what we wanted.
This time is different, because whatever the outcome we need to deal with it and live with it. It just breaks my heart that her life might be harder than it should be.
I've done some research about the heart condition it could be and it looks like it varies a lot in terms of how serious it is. So hopefully even if she does have a heart defect it is on the lower end of the scale.
Thanks for your support! It's just so nice to be able to talk to other women about their own situations. Makes it feel much less isolating.
Nomes, I hadn't even thought about this as a possibility. Thanks for letting me know it might be on the cards!

NomesL wrote:
The wellington@heart team is also very supportive & easy to talk to.

Depending on the heart condition you might have to give birth in Auckland. If this is the case you'll get travel & accommodation assistance - talk to your local hospital's patient travel Administrator. Good luck smile
Please keep us posted on your outcome so we can continue to support you through this time. Fingers Crossed
Liney3 wrote:
Please keep us posted on your outcome so we can continue to support you through this time. Fingers Crossed


Thanks Liney smile I will. And thank you for sharing your experience. That must have been really tough.
It was soo hard at the time but it was 6.5 years ago now, and since then I have had 4 more children. The pain eases over time, but the memories are there forever and when I read your post I could really identify with that... we had 6 weeks of waiting and appointments and only 12 hours between finding out the news and termination! I hated it, it really put anxiety into my other pregnancies however I now have found a fantastic doctor that really understands (He delivered 3/4)- although there are no more babies for me!!
Hi there, my little sister was born with a serious heart condition and had to undergo open heart surgery as a tiny bub. I won't go into details about the exact defects because there are so many variations in heart conditions. What I do want to say is that she is living a perfectly happy and very normal life. No1 would ever guess about the problems within her heart unless they see her her scar & ask "what on earth is that from" LoL

She had to undergo a second surgery at age 10 to replace wearing valves from the 1st surgery as a baby and recovered quickly. Between surgeries and now and beyond she is living a perfectly healthy life as a very normal girl. Has yearly check ups with a heart specialist and is 22 years now.
As a little girl she was exempt from sports at school and didn't have an interest in sports so this didn't effect her. If she did do strenuous activity usually she'd become tired before anyone else. There are not many people in her adult life who even know about her serious heart condition. She's healthy, happy, intelligent, beautiful, successful, and carefree and might I add that the technology has come a long way since she was born.

Goodluck with your journey! Be strong!
one of my twins was diagnosed with a very large VSD (no wall between the two ventricals) and his outflow valve not working. We were told at 18 weeks he would need open heart surgery as soon as he was born. But all the problems that he had was fixable. Miracles do happen as when I went back six weeks later the hole has stated to close and then another six weeks and no hole could be found. You have something on your side that your little girl is free from chromosomal abnormality. That is a big marker for kids with heart problems. So that's a huge plus.

What I am trying to say is the body is an amazing thing. Things can change. I had the worst pregnancy with the twins and we received all the bad new that you could receive when pregnant. Even being told that we may have to terminate one to save the other. But as I said miracles do happen and I have two very healthy boys about to start school. Both were born with great hearts the one that we were not concerned about has a heart mumur but nothing to worry about. So yes it is bad news but they can do amazing things and things may change. You still have a fair way to go in your pregnancy so as long as you are monitored and informed. Things may change.

Good luck. Please keep us posted on your progress.


muma-lovin wrote:
Hi there, my little sister was born with a serious heart condition and had to undergo open heart surgery as a tiny bub. I won't go into details about the exact defects because there are so many variations in heart conditions. What I do want to say is that she is living a perfectly happy and very normal life. No1 would ever guess about the problems within her heart unless they see her her scar & ask "what on earth is that from" LoL

She had to undergo a second surgery at age 10 to replace wearing valves from the 1st surgery as a baby and recovered quickly. Between surgeries and now and beyond she is living a perfectly healthy life as a very normal girl. Has yearly check ups with a heart specialist and is 22 years now.
As a little girl she was exempt from sports at school and didn't have an interest in sports so this didn't effect her. If she did do strenuous activity usually she'd become tired before anyone else. There are not many people in her adult life who even know about her serious heart condition. She's healthy, happy, intelligent, beautiful, successful, and carefree and might I add that the technology has come a long way since she was born.

Goodluck with your journey! Be strong!


Thank you so much for sharing that!
I think when you hear "heart defect" your brain, well at least my brain, goes to all the worst places. Especially in this waiting faze before we actually know what the problem is. So hearing experiences like that makes it seem more real but also more realistic in terms of everything turning out ok. Thank you!
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