I found this website that seems to be from a somewhat midwife point of view. The writer recommends, "I would choose to have the heelstick done to collect blood for the newborn screen only if the heelstick can be done humanely. This is ideally a heelstick done at day 6 by someone who is willing to take the time to warm the baby's heel and wait for the baby to be in a sleepy state so that the experience of pain is minimized." The writer also recommends feeding the baby prior to the prick.
Even with the tests, not all babies who are affected are diagnosed:
The American Academy of Pediatricians states that: "screening does not equate with diagnosis. Some infants with disorders included in the newborn screening battery will be missed, even when properly screened, due to individual or biological variations. Other infants may be missed due to administrative or laboratory error. Although the pediatrician cannot be held responsible for these problems, he or she must recognize that any child with a negative newborn screening test may still be affected by one of those disorders. The pediatrician should trust his or her clinical judgment, even in the face of a normal newborn screening report, and should carry out appropriate diagnostic testing if indicated by clinical signs and symptoms."
In going over the test for PKU, it would seem that our midwife can just get the blood from the cord, which I think would be fine as the baby won't feel it.
I was hoping to get input from all you parents out there. If you have any sources you found helpful in making decisions, please let me know as well.