Atrial septal defect

[daytonmom]

Hi, my  11yr old daughter was diagnosed with ACD a month ago, after noticing that she had some shortness of breath and fatigued. When listing to her heart the doctor noticed an irregular heartbeat. We were sent to have a Echo and EKG. After doctors reviewed the results of her echo we were told that she has ACD. We were then sent to Indianapolis for the pediatric Cardiologist to look at her, and do another EKG and echo. We were really hoping to hear that her hole could be repaired with the Cath procedure with the occluder. The news we received was not what we were hoping for. Her hole is 18-23mm in size and that the cardiologist felt the occluder would have to be about 28mm in size. The cardiologist also felt that the tissue around the hole is too floppy. So we left the cardiologist appt hoping we have made the right decision that my daughter will be having open heart surgery the end of March. The doctor said that we could attempt the cath procedure with the occluder in place, but it was a toss up if it would hold. Therefore we decided on the open heart surgery. Has anybody else experienced news as such that the tissue was too floppy and the hole was that big in size? Anybody with kids around her age? Staying strong for my daughter, but she is just beside herself being 11yrs old. Hoping for a easy repair with the surgery in 3 weeks. Any advice or encouraging words to help prepare us for this would greatly be appreciated. Thank you!

[Ger57]

There are 3 different types of ASD.
Primum and sinus venosus ASDs are normally repaired with open heart surgery.
Secundum ASD's can be repaired with a catheter procedure. Rarely, a defect is too large for catheter closure and surgery is needed.

I can not say if you made the right decision. The info you provided as well as my knowledge is too limited for that.
From either open heart surgery or catheter procedure, a 11 year old normally recovers very quickly. The outlook after both procedures is very good.

I wish your daughter and you good luck!

[Mark4124NH]

Did you go to a top academic medical center? If not you may want to get a second opinion. Certainly if there is any possibility that you could avoid open heart surgery you want to. Personally I've had one open heart surgery and a few closed heart surgeries. I'm sure your daughter will do fine in any case, but the less invasive the better.