My brother and his wife knew before birth that their son would need heart surgery after birth. He was whisked away immediately after birth for surgery - I'm not sure they got to hold him before surgery at all. Post surgery he was hooked to all sorts of machines, and chemically paralyzed so that his movements would not disturb the life sustaining devices or use any of the energy he needed to heal.
A week or so later, they were faced with the very difficult choice of whether to remove the life sustaining devices, as it turned out that his heart was more severely damaged than they had expected and the surgery did not allow him to live independently. They chose to remove life support, and were able to share a few minutes with him unparalyzed and without tubes and machines before he died. During that brief time they were able to strengthen their pre-birth connection with him, something that had been difficult when he was being supported by the machines and kept immobile.
One of the regrets they expressed at the time was that no one thought to bring a camera to celebrate and record the only few minutes of their son's life that he was machine free and able to interact with them. The vast majority of their memories, and all of their photos, are of the absolutely still waif with tubes running into his body and hooked to machines. His parents don't really know whether he looks like his older brother (who strongly resembles his mother's side of the family), his younger brother (who strongly resembles his father's side of the family), or entirely different. For the most part now, my nephew only exists as a generic silhouette on his grandmother's grandchild necklace and as a name on a gravestone in the children's graveyard where his remains are buried. Over time I think I would find photographs like these comforting.
The photographer whose skills got this project started sounds extraordinary (from the description by the mother while Maddux was still on life support):
<<At the moment, I wasn’t aware of the time and preparation that Sandy had put into setting all of this up. She had brought a black back drop with her that was clipped to the ceiling, picture frames and even a table. The 3 female employees with her, were each holding a light, reflector and a distance reader. A digital screen was set up to display her images from her camera. She had even thought to bring black turtle necks, that Daddy and Mommy each wore. Then, I sat in a rocking chair holding you, my baby. Soft music was playing in the background. Sandy very slowly started taking our photo. Every now and then, she would gently ask Mommy and Daddy to move our heads, tilt our chins or place our hands in a certain position. . . . Sandy and her employees quietly left Mommy and Daddy alone in the room with you and your nurse, Angie. . . >>
Resuming after Maddux had died <<Sandy and her staff gingerly walked back into our room. Mommy carried you over to the rocking chair and gently cradled you in my arms. Sandy then resumed taking our photo. Mommy could see Daddy watching our images come up on Sandy's screen. (Later that evening, Daddy had said to me he had never seen your Mommy more beautiful, or more gentle with you.) Again, everyone was crying uncontrollably. I loved being able to sit there and hold you with no wires or tubes connected to your tender, soft body. Mommy stroked your lips, kissed you gently. You just looked like a beautiful baby in a deep sleep. . . . After Sandy had finished with our session, Mommy and Daddy remembered thanking her over and over for being with us, and all she had done. We were so grateful. Then she said something that has never left me. She thanked us! Yes, Thanked Mommy and Daddy for putting our trust in her and letting her be apart of what we were experiencing. Daddy tried to pay her and her staff for being there, but they all adamantly refused. They all said how honored they felt being able to be with us. They didn’t even pack up their equipment. They just carried it into the hall, and started to dissemble it out there. They knew we wanted to be alone with you again.>>
http://www.nilmdts.org/index.cfm?PAGE_ID=101I would need considerably more practice as a portrait photographer before my photographic equipment skills were automatic enough that I would feel confident that I could exercise them without intruding on the very personal moments I was capturing.