Down's syndrome and heart defect

Stillharbor

Anyone have a Down's LO with a typical heart defect called an AV Canal?  (Where the wall between the atria doesn't form.).   We know the cardiologist wants to wait until 4-6 months to do the surgery and 4-6 weeks, we might have to start Lasiks.  Has anyone dealt with this?  How well did LO tolerate the meds?  What is involved in the surgery?

goldenleaves

Me!

My daughter had her repair at 6 weeks old, which is sooner than usual. She was in heart failure by 1 week and by week 3 we couldn't manage it at home. She was inpatient for 5 weeks. Now at 10 months old and 9 months post surgery you'd never know she was sick. She smiles, eats, plays, sits up. She's trying to crawl and loves to chase the cat and her brother. There is a light at the end of the tunnel! Good luck!