Teenager with Tetralogy of Fallot.

[BritinSpain]

Hi.

My daughter who is 14, had a total repair of TOF at 13 months of age.

Yearly follow up then discharged from outpatients at 8 years old.

This was in Bristol.

The last two days she has mentioned an ache in her chest like a muscle strain, and what she describes as an extra strong heart beat once every few minutes.

We now live abroad and I'm sourcing a cardiologist for her.However I'm terrified.

She has been healthy up till now, normal growth, no cynosis or breathlessness and no meds needed.

I guess my question is has anyone else had any similar symptoms or had experience of teenagers with need of further treatment for TOF?

Many thanks.

Nervous mum.

[MichaelJH Heart Star]

Quite sad to hear of someone so young with heart problems. My understanding is that children with this condition may need further treatment as they grow into adulthood or as adults. I am sure you will find an excellent cardiologist in Spain. During my journey I have met a few from different countries and all were excellent. Good luck!

[plewa]

My daughter is a similar case except now in her 30s. No symptoms of concern. But she will need to have her p valve replaced at some stage.

Your daughter should be seeing a cardiologist at least once a year.

Regards

[BritinSpain in reply to plewa]

Thank you very much.

I'm in the process of arranging her care now.

[gal4God]

Get her checked and be there 4 her. It’s not easy growing up wiv a heart condition, I kno I’ve been there and felt on my own and I don’t want that 4 ur daughter.

[Midgeymoo17]

I had TOF repair age 3 Months. Needed further Open Heart Surgery Age 20 and it is my understanding this is the norm. Most Fallots patients require lifelong yearly- biannual cardiology check ups. So please do get her evaluated.

This said the most common long term problem is a leaking Pulmonary Valve. This does not fit the symptoms you are describing (normally it is asymptomatic until the heart is irreparably damaged and then its more exertion related symptoms such as fatigue, fluid retention and breathlessness). Nor does the problem appear in the space of 6 years. My Pulmonary Valve leak was diagnosed when I was five- became severe age 16- operation age 20. So, it is very likely worse case is the cardiologist is going to tell you the valve is leaking and she needs annual check ups again.

What does fit the symptoms you are describing better, is that TOF patients have an elevated risk (it is still low) of abnormal heart rhythms. This includes premature ventricular contractions. These are harmless and my cardiologist choose not to intervene with mine. These PVC's do cause the feeling of an extra strong beat. However, evaluation is needed to confirm a) that it is these b) that they are innocent. A change in the number experienced can indicate a more serious issue.