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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

My 14 year old daughter has ASD

Hello,
My daughter is diagnosed with ASD (around 1cm dia) in the month of October. She has no symptoms but the right heart is enlarged. We were just fortunate to find it. The doctor has advised us to fix it using either Cardioform by Goretex or ASO Septal occluder by Amplatzer. He says we do not have the option to choose which one, because the choice depends on the location and size of the hole and that can be ascertained in the cath lab only during the procedure.

I am trying to go through the previous posts. I see all the experiences are with either Amplatzer or Goretex Helix. Cardioform by Goretex has been there since last few years. It is supposed to be the latest with very less Nickel-titanium alloy(the majority of times it causes problems due to allergies). I would appreciate if someone can share their experiences with the newer version of Goretex.

I feel it makes sense to get tested for allergy to Nickel before the procedure. However, our doctor doesn’t recommend it as just the skin patch test will not be reliable. We are in USA, California. Did anyone try to do Melisa test for allergy before the procedure?

We are scheduling the procedure in the month of June (summer vacations). My daughter is in high school and she prefers to do it when schools are off.

My daughter is in the school’s basketball team and is the captain of her team. I have consulted four doctors so far and they all say that we should let her play. It won’t create a problem for her. But, as a mother, I feel troubled by the idea of letting her play every day for two hours before the procedure (we have to wait for 6more months to get it done).

Maybe other parents have been through the same. Please share your experiences. I would really appreciate that.

Thanks

Hi Mom. No experience with Goretex. My ASD closure used the Amplatzer. Wanted, however, to comment on the play-no play question. While everyone is different, my experience is that I played sports including football & soccer in high school and soccer at college. Did a career in the Navy and since have worked globally in remote locations for an engineering company. What a surprise to me, to find out at 67 years young that I had a pretty good size hole in my heart with an enlarged right side! Anyway, all that to say that I think the Doc’s are right, let her play & don’t worry over her.

For the closure, recommend finding a cardiologist that has done lots of these ASD closures, and just as importantly, a hospital that has a 1st class rep for heart work.

I am 14mos post closure & doing quite well; was, at times, a rocky road due to reactions to meds, especially the blood thinners but doing well now and believing the same for your daughter.

All the best for your daughter and your family.

JJ

Thanks JJ,

Your reply is very reassuring. I feel much relaxed now.
We are getting it done at Cedars Sinai and the doctor is very experienced. I wish I can hear some success stories about Cardioform by Goretex as well. The doctor is not giving us an option to chose which one.

Thanks again and glad to know that you are doing well after catheterization.