Mitral Valve Regurtation Child

[Dine22]

Hi everyone,

I just got the diagnosis for a moderate mitral valve regurtation for my 7 year old daughter. We had several test and then they send us home, telling me we need to make tests every year from now.

I'm a little lost right now and feel extreme anxiety, to be honest. My daughter has a very loud heart murmur because of her floppy valve which can be heard when just standing next to her. So this adds to my daily worries - because it reminds you every minute of her condition.

But the most worrying is for me, that I did not receive proper explanation about what could happen - both positively and negatively.

I want to have hope for her but in my mind the most dangerous scenarios are playing all day long. This destroys me and I can't sleep anymore.

Does anyone knows a place where I can find help, other families with kids having this condition or trustful informations?

Thank you so much.

[CallumHVV Partner]

Hi Dine, sorry to hear about the diagnosis of your daughter and that you're feeling a bit lost with it all. I can put you in touch with parents who have gone through a similar thing. If you email me at [e-mail] we can talk about it more.

[Nickibmibile]

HiI was 15 when diagnosed and 17 when I had my first mitral valve replacement. All I can say is that it was the best decision my parents ever made. Within days I felt like a new person, my recovery was so quick it was amazing and I have nothing but praise for the medical team.

I had it replaced at age 36 and it was sooo much harder. Recovery felt really slow and I was very frustrated.

I had the childhood replacement to compare it with and I longed to be a kid again.!!

Having a very ill child is every parents nightmare, stay strong for her and be kind to yourself x

[PoppyImison]

Hi Dine,

I’m sure that is very scary for you. I was diagnosed with mild/moderate mitral valve regurgitation when I was 6 years old. I’m sure my parents were very worried but they did an amazing job of making me feel like everything was ok. I grew up as a completely normal child, it didn’t limit me in anyway. I genuinely never gave it a second thought. The only difference was I went to the hospital every three years for check ups to see if the regurgitation was getting worse. Over the years it progressed from mild though moderate steadily but I had no symptoms. I was very active and ran marathons climbed mountains . It wasn’t t until last year when I was 30 years old that the regurgitation became severe and I started to get terrible palpitations and concerning heart arrhythmia. Because of my close monitoring over the years the doctors were all over it when the valve started to deteriorate well into severe. The decision was made to operate asap so I had the best chance of repair. I had open heart surgery 2 weeks ago, and I am now recovering at home. I can’t tell you how surprised I have been at the speed of my initial recovery. Every day I feel better and totally marvel and what an amazing job my surgeon did. It was undoubtedly the scariest and hardest thing I have ever gone through. But I have gotten my life back and my health. I’m really looking forward to the rest of my recovery and getting back to my previously active life.

I know everybody will have a unique valve story. In my case I have been so grateful to have known from such a young age. I knew what the symptoms were when they started and the doctors immediately sprung into action when they needed to.

Wishing you both all the best.

S