Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life, by Amy Kuebelbeck, Chicago: Loyola Press, 2003. $17.95 hard cover.
Waiting With Gabriel is a beautiful story written with the passion and insight that only a mother can give. She and her husband were given the prenatal diagnosis of hypoplastic left heart syndrome (HLHS) 31/2 months prior to the birth. While they were never given the option of abortion, Amy talks about why that would not have been a good choice for them as they used the time to prepare to celebrate Gabriel's life and plan for his death.
This amazing book takes the reader through the journey of completing a pregnancy only to have what was hoped to be a few cherished days turn into 2 brief hours of life. Amy and her husband Mark made the decision, given the severity of the HLHS, not to try any heroics but to surround their baby with 2 sisters (a toddler and a preschooler), family, friends, and supportive perinatal staff. Amy carefully describes the selection of a photographer to take prenatal pictures of her pregnant belly being cradled by her husband and her hands, the plaster of paris used to make footprints of the new baby, the orchestration of the creation of memories to celebrate Gabriel's life and then to commemorate him at his funeral.
She talks also of the insensitivity and society's inability to respond to the antithesis of a much-awaited birth of the new baby when the baby is known to be dying. She aptly describes the insanity of a local newspaper's rules that led to her baby's inability to have an obituary in the local paper. Why? He was not a resident of the community. They were informed that their option would be to place a classified ad in the paper. As she asks in the book, what do you put such an ad under "D" for Dead? Or the receptionist at the hospital who greets the paternal grandparents with a mere glance and between chomps on the chewing gum who announces the baby is already dead. Unfortunately these things happen. Maybe through the efforts of this mother, they will occur less and less. There are many insights given in the book as to the things that helped the family cope-like the opportunity to talk to relatives ahead of time so gifts and mementos could be gathered, so an outfit could be selected for the birth and the funeral, so that a loving grandfather could build a wooden casket for his grandson. Also the greeting of the perinatal nurse who changed assignments so she would be with them through the birth as she had been following the family during the pregnancy and preparing them for what to expect at the time of Gabriel's birth.
The journey of this family will touch the hearts of any who read the book. As a neonatal nurse for more than 25 years and one whose efforts now focus on palliative and end-of-life care of newborns, children, and their families, this is a book that I will include in my work with the Attorney General's Task Force on End-of-Life Care for the state of Oklahoma, where we are preparing recommendations for possible legislation to improve care and with my Neonatal/Pediatric End-of-Life Nursing Education Consortium (ELNEC) teaching-a train-the-trainer model for health professionals created by City of Hope and the American Association of Colleges of Nursing. This is a book that should be recommended for any family that has a pregnant woman and knows that the baby will not live or for those parents whose baby is dying or has died in or outside an NICU. It should also be recommended reading for perinatal and neonatal staff members to heighten their ability to understand, take a little more time, and ease the fears of working with such families.
This loving book will hopefully help Gabriel live on and enrich the lives of the many families and health professionals it touches. I know it has enriched mine.