Are some children “incompatible with Life”? These parents don’t think so.
Late last year, Texas Right to Life released an article about perinatal hospice. The piece featured the story of a baby named Robbie, who was diagnosed in utero with Trisomy 18. The condition is a chromosomal abnormality that is considered fatal. Many parents around the world who receive this diagnosis for their children are told that they can abort their child; sometimes they are even encouraged to do so, under the guise of preserving the parents and child from experiencing the pain and loss that likely occur before, during, or shortly after birth.
But parents like Robbie’s have other options when faced with a difficult prenatal diagnosis, and they are speaking out. They testify to the fact that time, not ending the pregnancy, is what brought them closure and healing – and sometimes a baby who did not die. The loving support and care of a hospice organization prolongs the time that a family can spend saying hello and goodbye to their little one.
The four sets of parents in the video below participated in an Irish project called Every Life Counts, which is dedicated to ensuring that parents who face difficult prenatal diagnoses are informed of and given access to the perinatal hospice option, and loving care before, during, and after their child’s birth.
“Every child’s life has meaning, no matter what way they decide to come to you,” said one mother in the video. Another couple faced challenges when their daughter was expected to die, but unexpectedly survived: “She was referred to as incompatible with Life. But she lived with us for twenty-five years.”
Robbie, too, defied odds. He was able to go home from hospice, where he lived for nearly a month before passing a way. Hospice nurses came to the family’s home almost every day to check on the baby and encourage the parents. When Robbie died, the nurses came back to help the family prepare his body for burial, and to offer support in their grief. But those precious days spent with their son were irreplaceable.
“We found the term incompatible with Life very hurtful,” said the father of the little girl who lived twenty-five years. “And it’s not a medical diagnosis. It’s a judgment call.” Parents who carry their children until they pass away naturally in utero, or who give birth and love them for whatever period of time they are able to survive naturally, all echo an identical word of gratitude for their experience, and that is gratitude for the gift of time. Being able to carry their children, give birth, and love their children for the short time they have on earth allows parents to show their children the love they deserve, and experience the healing and closure they need to move on without their beloved little ones.