"Two of the most primal parental instincts are to keep your child alive and to protect your child from unnecessary pain. Those instincts usually do not collide. With our baby, they did." - from the book
Author, reporter, and mother Amy Kuebelbeck discovered when she was five and a half months pregnant that her baby would die within days of being born because of a congenital heart defect.
In Waiting with Gabriel, a new book from Loyola Press, Kuebelbeck shares the story of her family's heartbreaking loss-from their determination to do the best for their baby to the enduring love Gabriel manifested in the extended community.
According to Kuebelbeck, "Congenital heart defects are the leading cause of infant death, and hypoplastic left heart syndrome (HLHS) is the worst congenital heart defect there is." Research from the University of Michigan Congenital Heart Center indicates that HLHS occurs in one of about every 5,000 births. It affects approximately 1,000 babies in the U.S. every year. It was fatal to Kuebelbeck's third child, Gabriel.
"Just because a medical course of action exists, is that reason enough to take it?" she asks. After extensive research, conferring with doctors, nurses, clergy, and other parents of HLHS children, Kuebelbeck and her husband came to the conclusion that "no one could give Gabriel a good heart. So we set out to give him a good life."
As she gathered ideas for honoring Gabriel's short life, Kuebelbeck created a birth plan as a way to choreograph the precious hours of his life. Knowing about his condition in advance allowed them to prepare, plan, even grieve. They later learned that he wouldn't have been a candidate for surgery, assuring them that their decision to fill his short life with only love, and not painful medical interventions, had been the right one.
In his honor, Kuebelbeck and her family donated "Gabriel's boxes," keepsake packages to help grieving parents honor and remember the infants they lost. Several families that receive memory boxes donate more in the name of their child, continuing to aid others in their loss.
Kuebelbeck's memoir, Waiting with Gabriel, will be released in celebration of National Congenital Heart Defect Awareness Day, February 14th.
Amy Kuebelbeck is a former reporter and editor for the Associated Press in Minneapolis. She lives in St. Paul, Minnesota, with her husband and their two daughters.
By Albert H. Lee