Honoring Families, Infants, and Ourselves
By Britt Days, BSN, RN
NANN Footprints: Stories from the NICU July 2019
The doctors say that the future doesn’t look bright for you. They give your parents dire statistics about what your life will look like. It includes tubes and wires and wheelchairs. It doesn’t include walking and talking and all of the other milestones that children achieve during their development. The medical team offers your parents the opportunity to spare you from a life of dependency on artificial methods to live. Your parents decline because they grew up believing in life, at all costs. They do not want you to suffer. They love you so much. They do not want to change your care to comfort measures only because they hope for a miracle.
Your parents are from a different country. They require interpreters from a specific region of a foreign land. The medical team has numerous conversations to make sure that your parents understand. They do understand and they are prepared to face this fate.
The team that cares for you struggles because your parents’ beliefs do not match the beliefs that they grew up with. Many would not make the same decisions as your parents. However, they see the love your parents have for you and they follow through with your parents’ wishes. They are comforted by a story they hear from a hospital nearby from people who were consulted on your case.
Another family had a critically ill child with a bleak prognosis. This family was from the same culture as your family. These parents wanted “everything done” to prolong the life of their child. When that child passed away, the father asked to see the body. When that boy’s father saw bruises on the chest of his young child, he was not upset. He was grateful to see proof that everything was done. It made him feel at peace. This story helped our team to feel comfortable following through with your parents’ wishes.
Eventually, during the holiday season, your body had enough and you pass away despite all of the work of the medical team. Everyone was sad. You and your parents have touched the lives of everyone who works in our NICU. Just as the story from the nearby hospital gave honor and comfort to our clinical team, they now share your story to honor you and your life.