Meet the Characters
These characters are based on real families we interviewed.
We created fictional characters, but their stories reflect the experiences of real families making a difficult decision.
Elijah and Amani
Amani was born extremely premature and is now 10 months old. She wears oxygen to help her breathing problems. She is developing more slowly than other children her age, so she can’t sit on her own yet. She loves to eat! And watch her father and 5-year-old brother play.
Dara, Kai, and Steven
Steven was born extremely premature. He was very sick from the beginning. When he was 1 month old he got a serious infection and became even sicker. His parents agreed it was best to stop the machines, make Steven comfortable, and let him pass peacefully.
Sofia, Javier, and Santiago
Santiago is 2 years old. He was born extremely premature. At home he uses a trach and ventilator to breathe. He uses a feeding tube to eat. Santiago also has cerebral palsy and does not walk. A nurse stays overnight so his parents can sleep.
Jane and Grace
Grace was born extremely premature. Her mom, Jane, didn’t want to put her through any pain or medical procedures. After birth, the doctor wrapped Grace in a blanket and Jane held her close, making sure Grace knew she was loved and would always be remembered.
Next, you can learn more about the decisions these families faced.