Below is a post from Alexandra. Her Daughter Ava died Friday at One day old! Ava’s DX was very similar to Riley’s.
Alexandra…. Dr. Hanely at Stanford never called me back either. He was supposed to call me on Wednesday morning. I didn’t give birth until Thursday at 4:39 PM and if I would’ve been able to talk to him wednesday I could’ve asked to have Ava transfered right away. I was either on pain medication and sleeping or in too much pain to remember. I hate myself for not driving up to Stanford before she was born. I should’ve driven up there Monday night. Stanford told CHLA they couldn’t transport the baby but they never commented on whether or not they would do the surgery. Hospitals dont care. Both Kaiser in Riverside, Kaiser in LA, and UCLA told me that CHLA could handle Ava’s case. They said they could handle it even if the last 10% of her diagnosis meant that she had issues with her pulmonary veins. All of the perinatologists and pediatric cardiologist said they were doubtful that there were issues with the pulmonary veins. Then after she is born they tell me that she has the worst imaginable issues with her pulmonary veins and that NO ONE COULD DO ANYTHING TO HELP HER. Please tell any mother who is considering choosing anything besides the ABSOLUTE BEST surgeon for their heterotaxy baby is choosing to break their own heart.