Atrial Septal Defect? I need help/guidance/direction...
I guess I'm looking for guideance and help here. My daughter (2.25 yrs old) was just DX'ed with Artial Septal Defect. The doc said he would have a hard time saying that she DIDN'T have enlarging of her heart but its very slight at this point. He explained that the hole is 50% of the septum wall.
I'm in Seattle and I did go to childrens to a pedi cardio and the doc said there was a lot of conflict in the cath society about weather just to patch it or leave it and that there's few issues down the road but everything I read and watch (thanks Youtube!) says differently.
This appointment came because the last pedi who listened to her said that the murmur was SIGNIFICANT and RADIATING which is a sign of structural issues. Her whole life pedis have said she has a murmur, some say she doesn't some say its minor. In any case, I was like "meh" until this last one.
I got freaked and made the appt and canceled and rescheduled once. I thought - whatever, I'm doing HARM to her if something is grossly wrong and NOT knowing because I'm scared to know. She shows zero signs of distress or anything.
Her hole is 50% of the spetum wall's entire length. The doctor "assures" me that it won't get bigger but likely won't get smaller either and will just grow in proportion to her heart size.
I was just completely broadsided as I thought this would be "oh she's fine - a lot of kids have murmurs" type appt. So I didn't know what to ask. I didn't know what to say. I now am accumulating a TON of questions.
I was directed here by a friendly gal from another board and thought I'd ask your experience.
This doctor is talking like NEVER DOING ANYTHING even in the face of telling me that since she's a girl and may someday be PG the risk of STROKE goes way up from the pressure. Then I read all of these other things of long term damage from enlarged hearts, etc.
What are you all doing and hearing? Any resources? I would NEVER EVER do ANYTHING without at least 3 more opinions (I was shoved under the knife as a kid willy-nilly and would never do that to my child) but I'm not sure where to go - it seems that Children's is the best of the best. I'm in Seattle if that helps.
ANY suggestions, resources, info, or advice is totally welcome and begged for!
Thanks for reading my novel!
Re: Atrial Septal Defect? I need help/guidance/direction...
My daughter has a small ASD - about 4-5 mm - (and some other heart problems) that causes a small murmur and our cardiologist has indicated that she will require a procedure to correct it - not open heart surgery, probably a catheterization procedure. It's likely they will do it when she is 3 or 4 but it will depend on what happens with her other cardiac issues. If you don't trust your cardiologist, it can't hurt to go for another opinion.
The good news...ASD's are very common and easy to correct. They are the only Congenital Heart Defect that can be completely corrected. It sounds like you are close to a great Children's Hospital. I would make an appt. with a pediatric heart surgeon as well to let them explain everything. We spent 99 days in a Cardiac ICU with my son due to his very serious heart defect and we saw many kiddos come and go within days of surgery.
No one wants to put their child through open heart surgery or a catheterization procedure, but it will in the long run make life better for her. You might not notice any signs now, but it could and probably will affect her life as she gets older. I would definitely get a second or third opinion and find doctors that you are comfortable with and trust.
PM me with any questions...we lived and breathed the world of heart defects for 99 days and we have done a lot of research.
My nephew has a Ventricular Septal defect. His was repaired. I am not sure how much a difference it makes Atrial vs. Ventricular. He had 3 other defects that were repaired. He is 3 now and has a slightly enlarged heart and will need a valve replacement in the next several years, but overall is doing so well, no one, including him, would ever guess.
What I would want to know is the risk of heart enlargement and damage to the heart because of not fixing it. I will say that it is a major surgery, so if they don't want to fix it, does it mean, they don't want to fix it NOW because your child is young (there was no option in my nephews case, since he had to have other things fixed or die)? They may just mean that they want to wait and watch until she is older.
Good luck. I am amazed by what they can do with heats. My nephew would have died 30 years ago. Instead, he thrives.
my little guy has an ASD, though his is very small. it will be monitored until age 4 or 5. if it hasn't closed on its own, he will have it closed by catheterization procedure.
if you are not feeling comfortable with what your cardio told you, seek out another one. i was very comfortable after talking to ours.
GL
My ds has tetralogy of fallot. Oe of the aspects of it is a VSD. His is about 1/3 the total septum length at 9mm. He will have open heart surgery to correct it when he is 3 mos old.
What we did first was to goto a pedi cardiologist recommended by the reg pedi. He did an EKG and an echocardiogram. He then sat & explained everything to us like we were 5. It was great. Granted we had the fortune of finding the defect when he was still in my belly, but the cardiologist that we worked with while I was pg sucked the butt.
We found a surgeon at children's here in NYC and met with him. He reassured us that the surgery was common with great success and told us everything he would be doing. He was recommended to us by several people (drs) we know.
So I would first find a pedi cardiologist you trust. That cardiologist should work well as part of a team of drs (your reg pedi, surgeon, etc) and answer all your questions to your liking. He will then be able to refer you to a surgeon (should he feel you need it). Speak to your reg pedi about a couple of cardiologists so you can get 2nd & 3rd opinions from other drs. You can also call children's hosp in your area for referrals to cardiologists in your area as well as your ins co.
Good luck. Don't feel like you have to settle for any 1 dr. You don't. I searched & searched for drs for my ds before he was born.