Atrial Septal Defect Anyone?

sommerrayne

So, without going way into this (because I'm totally blindsided and shocked by this information), I'm wondering if anyone else's LO has this. My daughter's hole in the septum is ~50% of the whole septum wall.

The doc we saw said that he doesn't rec anything be done - like possibally EVER even though he admitted she has enlargening of the heart (slight at this point). Everything I read online says that if you DON'T patch, the affected person will likely have effects and damage irreversable by age 30.

Okay anyway, anyone else in this boat with me? Have you done the repair surgery? Planning it?

Any resouces?

hannah&ben

I don't have experience with this particular defect but I'm a heart mama too.

My advice: Second opinion.  And third if you want to.  

I'm assuming you saw a pediatric cardio?  If not, get to one.  If you did, get to another one in a completely different practice, even if you have to travel a bit.

If the next says the same then you can probably be certain this is the standard.  However, I don't think it is.

Enlarged heart = bad bad scene.   Some children's hearts are just a bit larger than 'average' naturally but with her condition there's no way to know if it's the norm for her or damage from her issues.  At the very least she should be closely monitored.

Jack had a chest x-ray last year for respiratory issues and his pedi saw his heart was slightly enlarged and freaked... We got him back to the cardio (where we go every 12 weeks anyway) and decided it wasn't a big deal but, he just had another chest x-ray to check things out again.  We've gotta keep and eye on it because of his other cardiac issues.

Did this info come at a regular cardio monitoring appt?  Are you near a Children's hospital?

I'm so sorry... I certainly can relate to the stress of having a baby (or 3) with a broken heart

Feel free to pm me if you wanna chat about anything.

Hannah

hannah&ben

Also - head over to the special needs board.  Several ASD mama's.  Although you have to specify what you mean by ASD   Can also = Autistic Spectrum Disorder.

nancy814

My DD has the same thing. She has a "moderate" size whole. Her heart is slightly enlarged b/c it's working harder. She has no restrictions right now. They are going to do the cathertization to patch the whole after she turns 2. However, we just took her for bloodwork b/c my husband has Factor V so we needed to find out if she does. If she does she'll have to have it sooner.

Our pediatrician referred us to a pediatric cardiologist. She wasn't referred until her 15mos appt. Prior to that they always heard a murmur but at the 15mos appt. my doc thought it sounded different. I would definitely see a ped. cardiologist. They told us the same thing that right now its not a problem but could be in 30 years.

Good luck!