20 yr old son has had 3 open hearts in 10 months.

[Myboyjoshie]

my son he was born with aortic valve stenosis has recently had three open-heart surgery and found replacements. He also had an aneurysm they had to fix. 2 pounds of endocarditis. I feel like something happened with his health care to cause this. has anyone had a bad experience with open-heart and endocarditis?. My son has been through hell and just wants to move on with his life but we’re all afraid to let him leave the house or touch anything for fear of getting an infection. I worry all the time we’ve been through so much.

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Hello

Your Son has been through such a lot and you all have as a family and I can totally understand the fear that it has left he is so young as well and of course he needs to be getting on with his life and hopefully he will in the near future

I really do not have any experience regarding your question but I think you need to if not already gt an appointment get one with the Consultants that have been caring for your Son and put all these questions to them and even tell them how it has left you feeling

I hope you get the answers you need and if you do let us know how you get on x

[Anon2023]

Hi. I’m so sorry for what you and your son have gone through. As a mother myself I can only imagine how difficult it’s been. I got sepsis after my first open heart surgery which led me to develop endocarditis. The infection led to me having to have a second surgery. They will never tell you that he picked up an infection in hospital but it could be a possibly. I could find no other explanation for my infection. I’m now nearly a year clear of endocarditis but I understand the fear of thinking it might come back. The statistics online are outdated and are skewed by certain patient groups such as intravenous drug users etc. if you read all the available research you’d probably find that although your son may be considered to be in an “at risk” group like myself, his risk of reinfection is incredibly low and he has a lot of positives on his side. I wish you all the best xx