Heart issues

[aussiettc]

So I'm pregnant with baby number 5, however at our 20 weeks scan they asked us to come back so the cardiologist could look at bubs heart as it appeared the aorta was narrow. We had our follow up scan two days ago and was told that the leftside of bubs heart wasn't functioning properly. The aortic valve has some thickening and narrowing, the left ventricle is thickened and showing scar tissue and the mitrial valve is opening or closing properly allowing for blood regurgitation. The clinical name for our problems Hypoplastic Left Heart Syndrome.
On a scale of 1 to 10 of serious heart conditions we are a 10. Immediately after birth bubs will be transferred to the neonatal intensive care unit where she'll be stabilised for a few days before undergoing the first on at least 3 open heart surgeries.

We are confident that we can eventually bring our bubs home as we have great medical help and support. Unlike most of these cases bubs left ventricle is there it's just not functioning at full capacity. This is a small blessing it what seems like nothing but pain and problems.

As they have caught it early we will have the best care possible and all the specialists and neonatal care unit will be ready and waiting at birth.

 

[KeepFaith29]

So I'm pregnant with baby number 5, however at our 20 weeks scan they asked us to come back so the cardiologist could look at bubs heart as it appeared the aorta was narrow. We had our follow up scan two days ago and was told that the leftside of bubs heart wasn't functioning properly. The aortic valve has some thickening and narrowing, the left ventricle is thickened and showing scar tissue and the mitrial valve is opening or closing properly allowing for blood regurgitation. The clinical name for our problems Hypoplastic Left Heart Syndrome.
On a scale of 1 to 10 of serious heart conditions we are a 10. Immediately after birth bubs will be transferred to the neonatal intensive care unit where she'll be stabilised for a few days before undergoing the first on at least 3 open heart surgeries.

We are confident that we can eventually bring our bubs home as we have great medical help and support. Unlike most of these cases bubs left ventricle is there it's just not functioning at full capacity. This is a small blessing it what seems like nothing but pain and problems.

As they have caught it early we will have the best care possible and all the specialists and neonatal care unit will be ready and waiting at birth.

You sound very brave and positive which is exactly what your lil bub needs. My thoughts and prayers are with "bub" and your family.

 

[kit10grl]

My DD was diagnosd with a heart condition at her 20 week scan too. Not quite as serious as HLHS but still scary stuff. She had her first OHS at just 8 days old. It is looking inevitable we will need to have further surgeries in the future too. Its fantastic they caught it early as so many CHD's are missed on scans at least now they can be prepared to give all the care your LO will need as soon as they are born.

I remember how scary it felt though, and even though like you i was keeping a positive outlook as much as i could i remember lying inbed at night wishing i could keep her in there forever where she was safe, or beginning to wonder about the what ifs and less positive outcomes. There are lots of CHD groups on facebook that will be able to let you talk to real people in your area who have gone through what your going through and i found them a lifesaver. My family only ever wanted to reassure me when i tried to talk about it and i needed to prepare for te worst by talking about it and so online was a great place for me to talk about my fears.

As well as that it will answer all those little random questions that you dont want to ask the doctors cause they seem insignificant or vain. For example i wondered what the scarring would look like once it had healed as i knew we were having a girl and i kept thinking things like what if she wants to wear a bikini when she is older. Too stupid and vain to ask a doctor who is trying to save your babies life but still a question that i had.

people showed me pictures of their babies scarring and it put that worry at ease for me and let me focus again on the improtant things.

Hope this helps a little

 

[beagleowner]

A friend of mine has a little girl with HLHS. It's a serous condition and she's had to have a few surgeries, but she's doing great!

 

[going_crazy]

Hey, just thought I'd send some more positive thoughts your way from a fellow Heart Mummy. My daughter was born with a rare combination of heart defects. She's 3 and a half now and due her 4th surgery (2nd OHS) next week
Anything I can help you with feel free to ask, however I think kit10grl has also given great advice
xx