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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

2nd opinion on child's ASD?

Has anyone had a 2nd opinion on their child's ASD?

My son was diagnosed with a 17mm ASD at 9 months (he is 8 years old now and hole is down to 8 mm in size). His cardiologist suggested at 9 months of age, we should wait to have surgery as the hole could close on its own. Therefore, he has been monitoring him for the past 7 years. At each bi-annual visit he suggests we wait and do something at the next visit. Mainly because they want to do the less invasive occluder device over OHS and he hasn't really had much for side effects. At his last visit 2 years ago our cardiologist wanted to do the procedure but once he consulted with his partner they decided to wait as they wanted him to grow more and allow time for his veins to get bigger. We return the to cardiologist in less than 2 weeks and we are at a point where we need make some decisions on correcting his ASD. We only have one pediatric cardiologist office in my city and I feel like I am putting all of our trust and my son's life in one person's hands. Do you think a 2nd opinion on treatment is warranted?

Also, I have read about issues with the occluder device. Any opinions on the device vs. OHS?

Any input would be appreciated! Thank you.

Hi Amy, can’t help you with Open Heart Surgery(OHS) but had an Amplatzer put in via groin vein.actually right upper thigh. This was in October 2013. I was lucky and had Amplatzer there along with my cardiologist who had a lot of experience and success with it. They tried three times to plug me as by TEE is appeared small but the cardiologist expected it to be large as I was so ill at times with lots of symptoms. I had the full heart cath done at the same time. I was anesthetized so I didn’t feel anything. I think and I could be wrong that the treatment for an ASD depends on 3 thing. 1) where the ASD is in your heart,2) the doctor and his preference including experience and 3) what the patient wants. Just make sure your Doc has lots of experience in repairs. If you want a second opinion there is nothing wrong with that. It can give you piece of mind and helps you make your decision. Either you will like him or her or find yourself happy with your current cardiologist. If you are in Des Moines aren’t you near the university Hospital?I was there for my foot a few years back. My cousin lived in Ames for years teaching at the college there. She suggested I go to Des Moines. What a really nice area ( Iowa). The people are really nice. We drove from Ames to New Mexico. What flat land until Colorado. Anyway, hope things go well for your family and your son, take care, Linda

Thanks for the reply. Yes, IA City hospital (the university) would be the closest and where we would go for a 2nd opinion, if we decided to do so. We just want to make sure we make the right decisions for our son.

We had his appt this week. His ASD hasn’t changed in size from our last visit (7 mm, down from the original size of 17 mm) and the cardiologist said his pulmonary activity and pressure in the heart was good. He now has a leaky valve but the Dr didn’t seem very concerned about it at this point. The right side of his heart is still slightly enlarged but is also not of great concern. He stated he doesn’t want to do the repair since he doesn’t have any symptoms such as pulmonary hypertension, fainting, dizziness, etc. He said the risks for repair are greater than the risk of the ASD, so unless he develops symptoms we should let it be. The biggest risk of the ASD is stroke, but the percentage for that is low. He said if anything changes, we will re-visit a repair. He explained that although the size of the ASD is the same, his heart continues to grow so the hole is essentially smaller (in comparison to the size of his heart), which makes sense. I am somewhat confused by his decision to not repair, as he has always told us this has to be repaired. At our last visit he stated they would need to do the repair by the age 10 due to activity in sports, etc.

Hi Amy,
Did you get the second opinion?
Linda

We haven’t gotten that far yet. His appt was just a few days ago.

I think a second opinion is a great idea. It should help put your mind at ease.

Believe it or not frequently interventional procedures for a little one can carry a higher risk than open heart surgery. They are threading through a very small space and there is a LOT that can go wrong. With a bigger operating field there is more control. If you think of OHS being possible less risky than interventional Cardiology you can understand the cardiologists point of view. Keep in mind there is a pretty good growth spurt just ahead........

Now if it was me I would not want an opinion from "Dr. Nobody" go for the Gusto.... That will require travel I know. Make it a family trip/vacation with the appointment a "while we are at it." type of thing. Kids can get scared beyond reason. While you don't want to over minimize things. You do not want to make your sons health issues "the" focus either. Trust me on this. Imagine his confusion with all of this going on around him, the doctor appointments the tests etc. and he feels mostly fine...... Its obvious he has a great Mom (and a smart one) Good luck going forward. Trust me on one other thing. No matter what happens on the outside we understand whats going on inside..................... Please stay in touch

TJ

Hi Amy,
Did you get a second opinion ? Has the ASD reduced in size since your last post ? Wishing you best,
Sandy