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!