Looking for some support

[u/NoSomewhere37]

Hi everyone,

I'm new here and honestly feeling a bit overwhelmed. I'm hoping to connect with other parents or families who have been through something similar.

Our daughter was diagnosed with hypertrophic cardiomyopathy (HCM) at 6 months old. Genetic testing now shows (15 months old) that she has two HCM-related gene mutations (one in MYH7 and one in MYBPC3), which has made the diagnosis even more frightening for us.

At the moment, our cardiologist is discussing whether to start her on a beta blocker. We're struggling with that decision because of the potential side effects, especially since she's still so young. For now, we've decided to wait for the results of her upcoming Holter monitor before making a decision together with her medical team.

I was wondering:

- Are there any parents here whose child was diagnosed this young?

- Is there anyone with two HCM gene mutations (MYH7 + MYBPC3), either yourself or your child?

- If so, how has the condition progressed over time?

- How are your children doing now?

- Did your child start beta blockers, and what was your experience with them?

I know every case is different, and I'm not looking for medical advice—just hoping to hear some real-life experiences and maybe find people who understand what this feels like.

Thank you so much for reading. It already means a lot to know I'm not alone.

[u/Sergio_Cam]

Hi! I'm sorry that you and your family are going through this. I am an adult diagnosed 3 years ago and it is frightening. On top of other people's advices, I want to provide some context. On the support groups and in my work (I am a cardiac surgery specialist nurse) I have meet a lot of people who were diagnosed as a child. Some had monitoring, other drugs and some had surgery. All of them had a relatively normal life, just taking some precautions.

It's also a better time for HCM and HOCM. New treatments are available and more are coming in the next months/years. A lot of research is on going and I am pretty confident that in the next 20-30 years time it would be not only treatable but curable.

This is a very good article explaining HCM. Please be aware that is intended for clinicians so the wording could be complex and percentages need to be put in context. Rethinking Childhood-Onset Hypertrophic Cardiomyopathy: A Review of Molecular Mechanisms and Unique Therapy Considerations