a work friend of mine had a GD that was born with it, she has open heart in her first year of life and has to have another open heart surgery later in life.
Her GD is probably 3 now? (we don't work together any longer) but she is living a "normal" life, you'd never know.
I'm not sure if that helped, I know when we had medical issues w our DD it helped knowing that someone else got through it.
we will be thinking of your family (hugs)
Be kind whenever possible. It is always possible.