Mended Little Hearts Open Forum

Hi everyone!

My name is given name is Karen but you can also call me Teddy. 
I'm a mom to 4 wonderful children. 19, 12, 11, and 9. My 9 year old ,Kiarra, underwent OHS Nov/2016 for a Right Coronary Artery with intramural course. So far, still recovering and she goes back at the end of March for further testing to ensure the repair was successful and that she can go back to playing competitive sports. 

How we found out that she had this issue with her heart was incidentally. We were one of the lucky ones that didn't find out via the autopsy table as majority of cases are found. She was bit by a tick. Which gave her Lyme Disease and when I read up on the issues with Lyme Disease, something didn't sit well with me on how she was acting during the treatment of Lyme Disease and I asked for a cardiac work up and it was incidentally found! She had a little guardian angel watching over her. That guardian angel has been there since birth. We almost lost her more than once after she was born premature with an infection that they never could figure out what it was other than to call is sepsis. She had issues with her heart then, PDA and a few other things but by the time she turned 2, we were told she had a clean bill of health, heart wise and no worries. 

We know that there are not many in the US that are found to have this complication of the heart. Googling it doesn't give you much information. Where we finally decided to have her repair done with OHS, they put us in touch with another family that had just been through something similar a few months prior to my daughter's tick bite. However, their child was 15. 

We got numerous opinions, and when I say numerous I mean numerous... lol We wanted a surgeon that had done this more than 1 or 2 times. We get that the long term success rate isn't known yet as it's just been within the last 7 years that a study was started. 

In the meantime we do what the cardiologist tells and and hope and pray that her repair will be the only one she will ever need and she can continue with being a little spitfire on the floor for any sport that she plays with no worry of sudden cardiac death! Fingers crossed for the end of March to get that all clear to resume sports.

In the meantime, my daughter wants to bring awareness to this heart defect and save someone like herself so that they don't end up a statistic from an autopsy table. Simple cardiac testing for those playing competitive sports would be the answer but as a doctor pointed out to us, there is no way insurance companies will cover such a test, just so ensure a child is safe to play a sport. 
It was suggested that the rest of our children also be tested for the defect and the other 3 do not have it. Other family members of ours have had their children tested too and so far she's the only one in the family. However, knowing that this could be something possibly genetic or running through the family, it's a simple peace of mind to not find out after a catastrophic event.

Within our family runs many heart issues. My father has had 2 OHS' and might be on his way to a 3rd. So I've unfortunately had the opportunity to see it from an adult in my family (and other family members with OHS procedures) and now our daughter. So please reach out. I've found no one knows what I have felt or feel and no one can relate to the fears I still have and will have. It's a very isolating feeling and experience! My husband's the type that would rather keep it all inside and just not talk about it. It's the big bad US Marine in him... I'm the feelings, cry at a sappy TV show ending type of gal... 
Looking forward to getting to know you all and/ or your children's stories! 

Hi everyone!

My name is given name is Karen but you can also call me Teddy. 
I'm a mom to 4 wonderful children. 19, 12, 11, and 9. My 9 year old ,Kiarra, underwent OHS Nov/2016 for a Right Coronary Artery with intramural course. So far, still recovering and she goes back at the end of March for further testing to ensure the repair was successful and that she can go back to playing competitive sports. 

How we found out that she had this issue with her heart was incidentally. We were one of the lucky ones that didn't find out via the autopsy table as majority of cases are found. She was bit by a tick. Which gave her Lyme Disease and when I read up on the issues with Lyme Disease, something didn't sit well with me on how she was acting during the treatment of Lyme Disease and I asked for a cardiac work up and it was incidentally found! She had a little guardian angel watching over her. That guardian angel has been there since birth. We almost lost her more than once after she was born premature with an infection that they never could figure out what it was other than to call is sepsis. She had issues with her heart then, PDA and a few other things but by the time she turned 2, we were told she had a clean bill of health, heart wise and no worries. 

We know that there are not many in the US that are found to have this complication of the heart. Googling it doesn't give you much information. Where we finally decided to have her repair done with OHS, they put us in touch with another family that had just been through something similar a few months prior to my daughter's tick bite. However, their child was 15. 

We got numerous opinions, and when I say numerous I mean numerous... lol We wanted a surgeon that had done this more than 1 or 2 times. We get that the long term success rate isn't known yet as it's just been within the last 7 years that a study was started. 

In the meantime we do what the cardiologist tells and and hope and pray that her repair will be the only one she will ever need and she can continue with being a little spitfire on the floor for any sport that she plays with no worry of sudden cardiac death! Fingers crossed for the end of March to get that all clear to resume sports.

In the meantime, my daughter wants to bring awareness to this heart defect and save someone like herself so that they don't end up a statistic from an autopsy table. Simple cardiac testing for those playing competitive sports would be the answer but as a doctor pointed out to us, there is no way insurance companies will cover such a test, just so ensure a child is safe to play a sport. 
It was suggested that the rest of our children also be tested for the defect and the other 3 do not have it. Other family members of ours have had their children tested too and so far she's the only one in the family. However, knowing that this could be something possibly genetic or running through the family, it's a simple peace of mind to not find out after a catastrophic event.

Within our family runs many heart issues. My father has had 2 OHS' and might be on his way to a 3rd. So I've unfortunately had the opportunity to see it from an adult in my family (and other family members with OHS procedures) and now our daughter. So please reach out. I've found no one knows what I have felt or feel and no one can relate to the fears I still have and will have. It's a very isolating feeling and experience! My husband's the type that would rather keep it all inside and just not talk about it. It's the big bad US Marine in him... I'm the feelings, cry at a sappy TV show ending type of gal... 
Looking forward to getting to know you all and/ or your children's stories!