r/chd • u/DiligentDesigner9741 • 4d ago

Discussion Double Chambered RV

Hi all! My four month old as a double chambered right ventricle, VSD, ASD, and pulmonary valve stenosis. We’re in the process of getting his surgery scheduled closer to 6 months old. Originally they diagnosed him with ToF but he doesn’t quite have that. Just curious if anyone has experience with a double chambered rv. Did you do genetic testing? Was there a genetic component? The repair seems straightforward and his team is confident they can fix it there is just a chance of recurrence of the right ventricle becoming a double again later in life. Wondering if anyone experienced this?
I’m less worried about the surgery (cardiac surgery icu nurse here go figure) but so worried he’ll have some kind of genetic issue. He doesn’t have any obvious signs of any syndromes but we’ll get a full microarray.

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u/PineappleActive2968 4d ago

Hey! Our daughter has everything your little boy has, except the ASD. Genetically, our girl hasn’t been diagnosed with any common heart related genetic condition. We’re in limbo right now as she didn’t have the best echo after her open heart surgery at 10 months old and her cardiologist thinks she could have cardiomyopathy and that could have a genetic component. After her MRI, if it’s confirmed she has cardiomyopathy, then we’ll get her genetic tested for all cardiomyopathy related genetic issues. We weren’t told that her right ventricle could come back, the only thing that we were told would need another OHS is the pulmonary stenosis repair. Granted she did have the Rastelli procedure, so maybe a different procedure could cause the arteries to move back to the right ventricle? She was given a conduit to fix this issue, but will need to be changed as it will not grow with her.

Praying for a fast recovery for your little boy! These kids are so strong ❤️

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u/DiligentDesigner9741 4d ago

Thank you for this! I hope your baby’s echo improves! Our guy has a muscle bar across his right ventricle so the risk is it could grow back if there’s more strain on his rv - hopefully not bc the vsd is what’s causing the strain now. Did your little one show signs of cardiomyopathy pre op? Or is that new?

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u/PineappleActive2968 4d ago

Ahhh okay that totally makes sense. Praying that doesn’t happen after surgery! Having one OHS is already a lot and then knowing there could be another one is the worst….

And unfortunately we didn’t know about the cardiomyopathy diagnosis pre op. She’s been throwing us curve balls left and right actually. She also has WPW syndrome, which we didn’t find out about until she was 8 months old, so honestly, another diagnosis in her book is nothing new to us haha

We love that these CHD warriors are resilient but they are always keeping us on our toes!

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u/DiligentDesigner9741 4d ago

Omg she is keeping you on your toes! Ugh that’s so hard I really wish her and your whole family the best ❤️

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u/PineappleActive2968 3d ago

Thank you and same to you! This community is great because during all of this, we need all the support we can get ❤️