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Atrial Septal Defect in 3 year old

Posted by @sommerrayne in About Kids & Teens, Jul 20, 2011

A very long story short, my daughter was DX'ed with ASD at age 2.25. we've had doctors tell us on and off that she has a heart murmur. I'd specifically ask doctors if it was something to be concerned about and all of their answers were "no, kids outgrow them", other doctors wouldn't hear it, and some would say "keep an eye on it but no measures need to be taken - its never a structural issue". Then once when she was sick with a fever and respiratory thing, I brought her to the clinic here in WA and the doctor about flipped her lid and wanted her seen by Children's Hospital Clinic. We made the appointment not expecting anything structural. Went, found out she has an Atrial Septal Defect (1cm). I was SHOCKED to say the least but the doctor we saw at that visit, supposedly a Atrial Septal Defect (ASD) specialist, said "she doesn't need anything done. she'll be fine. don't worry about it. come back yearly and we'll watch it but absolutely nothing needs to be done about it - she doesn't have enlarging of the heart at all.". Everything on the internet disagreed with him. I know Dr. Google isn't the best place to turn but my gut said that he was wrong.

Then, as the year passed and we had the opportunity to observe her physical activity as compared to other kids her age, we noticed that she was lagging behind - pooping out faster...just being tired faster. So, we decided that we wanted another opinion. We had always said we'd get 2-3 opinions before doing or NOT doing anything. I called around to every cardiac specialist in the pacific northwest and found that the ONLY other guy who does ASD repairs in Seattle moved. So, our option was - stick with Childrens and just believe them or seek outside opinions. Since we were in MN for a month working on our home we have there (rental), I decided to try to get her into Mayo (which usually takes months so I wasn't holding my breath) but they whisked us in somehow (they knew nothing about her so it wasn't based on "severity" or anything - it was just luck and my begging).

We went, she had an echo, they said she DOES need a repair, her heart is 25% enlarged (and that couldn't have happened in the past year since initial DX), and that they want her repaired in the next 6 mo. preferred, 12 max. before her heart and pulmonary artery becomes hypertensive.

So now, back in WA, I'm stuck between having another appt with Children's (scheduled for Aug 1st) and seeing what they say but not trusting them regardless (have another daughter with a cleft palate they've treated like crap) or just schedule the repair with Mayo and be out 3K in travel costs (that we don't have).

I'd love your experience, thoughts, and input!


Posted by @domaha62, Jul 23, 2011

Hi I have a daughter who is 9 years old now but she had an ASD as well. It was caught at the age 0f 5 weeks old. Dr's. do tell you they will watch the progression of things usually for about 6 months. Somtimes these holes if small enough will close on there own. But my daughters was quite large. But, my daughter was failure to thrive. So by the time she was 9 months old she had her surgery. She has not had a problem since with her heart but still will always be considered a heart patient and gets checked out every year. I say follow your gut "MAMMA KNOWS". I say Money can't bring your kids back, but Money can help your kids. Spend the money and go get the surgery at the Mayo clinic.
Signed Been There


Posted by @agke2010, Aug 29, 2011

Hi, i'm 21, going to be 22 next wk. i just found out in June that i have sinus venosus ASD. i went to my family doc for a physical and she noticed a heart murmur. she sent me to a cardiologist for a ultra sound. they found that i had an enlarged heart and immediatly sent me for a ECG and the following wk for a TEE. the doctor at the hospital thought that i would need surgery within 3 months becuase of the progression. (i already have the shortness of breath etc) i live in Canada so our healthcare is paid for but becuase of that the doctors aren't overly promt. i had these tests done in June and the secratary at the cardiologist office forgot to book my MRI that was going to be done at a hospital in Toronto ON. 2 months later she finally admitted the fact that she had forgotten and booked it. i am now awaiting an appt. as soon as i have that i am schduled to see the surgeon at Toronto General. becuase this was all sudden and i had no idea before i feel rather bewildered. i would love to talk to others who know more about it and what to expect etc. do you know what type of surgery your daughter needs to close the hole? the doctor at the hospital thought that i would need open heart becuase the posistion and size etc. my own cardiologist doesnt seem to stressed, i don't know if it is becuase it is something that doesnt need to be stressed about or if he doesn't care. How can you ever tell with doctors?! I gave up and decided to continue living my life as before and continue exercising etc. my mom gets worried though and is thinking about me coming to the states and having an operation so we don't have to wait the line in the Canadian system.

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