Elena LaVictoire's List: Mothers love your babies

• I will permanently bear the mark of a woman who has lost her child.  There are many of us walking here...in the grocery store, at the neighborhood barbeque, at the movies.  We walk without necessarily recognizing each other, side by side and a million miles apart.  If you are one of these women, I want you to know that as I write these words, I am praying for you.  I am mourning what you have lost in this life.  I am praying that God will fill you as only He can, and that in time, you (and I) will be with our daughters and our sons again.  Know that I hurt with you tonight.

• As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.
• In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.
• Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.
• However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

• Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?

  But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.
• When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.

• Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

  Courtesy of Deibert family Robbie Deibert, the day he was born.

  Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.

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