Hi Gail! I'm Erin mother to Emily who is also a VATER/VACTERL baby.. She was born with cystic kidneys - only one is actually working, congenital scoliosis (9 vertebrae didn't form correctly) and pulumnary artresia/tetrology of fallot (pulmunary artery didn't form correctly) and they did her first heart surgery when she was 8 days old.
Emily is a "normal" little girl at almost 8 months old. We just find that some of the milestones other kids seem to make she has issues with - like crawling. In Oct 2006 (I think) was measured to have a 60 degree curve. We are working with Children's Hospital in DC on doing the VEPTR procedure on her - but they usually don't want to start that surgery until they are closer to 1 years old. That's due to the fact babies tend to double in size in their first year. After that - they still grow - just not as fast.
It's always nice to find other parents going through the same sort of issues.
Erin - Mother to Emily who was born with:
1) Pulumnary Artresia/Tetralogy of Fallot
- 2 conduit replacement surgeries
- 2 stents inserted in conduit
2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)
3) Cystic Kidneys
- Right one non-functioning
- Left one growing and working well