Trisomy 13

See also http://livingwithtrisomy13.org/MemoriesofJerimiah.htm  Trisomy 13: WHEN WHAT SEEMS BROKEN IS PERFECT The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase and thus reflects a thriving child. It ends abruptly at 80 days.   How can the value and purpose of a life be determined? Can these be measured by longevity, intelligence or the productive contribution of an individual to the economic base of society? Even more important, who has the right or ability to make this judgment?   My husband and I were recently faced with a very difficult situation. We are in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us. We were pleasantly surprised when we discovered that we were expecting a new life to love and nurture.   We first heard of our unborn daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”   When the geneticist uttered the dreaded words, “your daughter has trisomy 13” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and...

Prenatal Hospice / Perinatal Hospice

Perinatal Hospice http://perinatalhospice.org  Hospice care serves patients of all ages…even those yet to be born. Last year, Mary Gravina, a social worker at the nonprofit Hospice Care Network, received a call from a pregnant mother of three in Merrick. Donna Dobkowski told the social worker that she had been informed by her doctor that the fetus growing in her womb would not survive long after birth. The child was developing without kidneys, which is fatal. Her doctor advised that she terminate the pregnancy at 14 weeks, when the abnormality was first noticed. She had her own plan. Dobkowski wanted to give her child life, even if that meant only a few good minutes. She continued the pregnancy, despite the concern of her doctor and other doctors she saw for confirmation of her child's grave disease — Potter's syndrome. During her sixth month of pregnancy, she was referred to Gravina at the care network, who helped her devise a birth plan for her child and her family. Gravina was invited into the labor and delivery suite when Jonathan Dobkowski was born in May. After an emergency cesarean section, mother and father held their newborn son. The baby's first cries sounded normal, and the boy looked healthy.  But his lungs were not fully developed because of the missing kidneys, and he died after an hour in his mother's arms. But during that time, with Gravina at their side, the couple was able to name their baby, gaze into his eyes, hold him, baptize him, kiss him and introduce him to his three siblings. Gravina bought each of the children a camera to take...