there the newmans meet nurse pat chabaro. what do you remember most about that day you met the newmans? >> they were absolutely devastated. families will say, when is the surgery? when is the surgery that's going to make this all go away? >> right. >> and unfortunately, it's a journey, it's not a surgery. >> reporter: for the newmans, the journey was just beginning. they say it was something unexpected that happened in the hours after thnathaniel was bor that sustained them through the early days and then the later months and years ahead. >> we turn on the tv. and it was the grammy awards. the show starts with christina aguilera singing the song "beautiful." ♪ i am beautiful no matter what they say ♪ >> you talk about timing. and no matter what people say, no matter what people do, you're beautiful in every single day. ♪ that song resonated. we got up out of the bed and we went down to the nicu and we held thnathaniel for the first time. we held our son. sorry. >> reporter: unlike a typical infant's face, nathaniel was born w