Perinatal Hospice: Helping Parents of Severely Disabled Unborn Babies

National   |   Brad Mattes   |   Jan 28, 2014   |   12:03PM   |   Washington, DC

It was supposed to be a happy time. The day of a 20-week ultrasound is a special opportunity for parents to see in greater detail the wonder of life carried within the mother’s womb. Often, it’s when they discover if their child is a boy or girl. Conversations will turn to baby showers, name choices and how to decorate the nursery. It’s a joyful time of planning and preparing for this new, precious addition to the family.

Sadly, not all parents are able to celebrate. For some, the ultrasound reveals devastating news of a grave or fatal prenatal diagnosis. What was intended to be uplifting, becomes a time of grieving. My words fall short as I can’t fathom the pain these parents experience.

preemieAdding to this tragedy is the fact that many medical professionals will advocate for abortion in such cases. Overwhelmed parents may feel as if they have no other choice. Statistics don’t monitor the number of parents who choose abortion after receiving a terminal prenatal diagnosis. However, experts have estimated that 60 to 80 percent will make the decision to end their unborn child’s life. Those who choose to carry to term can face opposition. Sometimes there’s increased pressure to abort, and some parents have reported insensitivity, even being told they are “wasting the doctor’s time.”

Perinatal hospice offers life-affirming support to families who don’t abort their baby with a life-limiting diagnosis. Perinatal hospice is a philosophy that embraces the baby’s life—before and after birth. It also assists parents in making preparations for their child’s death. Ideally, perinatal hospice will include a team of obstetricians, perinatologists, labor and delivery nurses, neonatologists, NICU staff, chaplains/pastors and social workers. Some of the services may include special birthing lessons for women who don’t want to be in a class with couples carrying healthy babies. They may provide counseling on how to talk to friends and family about the diagnosis and assist in making decisions regarding palliative care measures. Lizabeth Sumner, a palliative care coordinator emphasizes, “Families can choreograph their child’s very brief life with their family. Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, or who will hold the baby when you know he is going to die.” As prenatal testing has become increasingly more common, more perinatal hospice programs have emerged. A listing by state is available at www.perinatalhospice.org. I can’t overemphasize how vital it is for parents to be proactive advocates for their child’s short life. Even if there’s not a program in the area, it’s still the parents’ right to create a loving and compassionate plan for themselves and their baby until God decides to take that child home.

The organization, Now I Lay Me Down to Sleep, is a nationwide network of professional photographers who volunteer their time to beautifully chronicle the brief time the family has with their baby. This memento is one of the most precious things the parents own. I had the privilege to meet photographer, Jolene Kroeger, and two of the families whom she photographed. It’s a cherished experience and the pictures help to keep the memories alive.

Lindsey and Kevin Dennis faced this situation when pregnant with their first child. During a routine 20-week ultrasound, their daughter, Sophia, was diagnosed with anencephaly. The condition meant that because of a neural tube defect, her brain would not develop. Her death was imminent, either in the womb or shortly after birth. In her blog, Lindsey wrote, “Our hearts were crushed. Yet, we determined that every moment we had with Sophia would be a celebration of her life and the time that God gave her.” Week-by-week, throughout the remainder of the pregnancy, the couple did just that. They documented experiences they wanted to share with their daughter… her first water balloon fight, tasting her first s’more, and having a Daddy-Daughter date. Friends took part too and planned a special “princess day” for the family at Disney World. The couple cherished the precious time they had with their daughter while she lived within the womb. When she was born, they were blessed to hear her sweet cries. They celebrated her life with family and friends for the brief 10 hours that Sophia had on this earth. Everyone wore buttons that read, “I’m celebrating Sophie” and they even had a birthday cake. In spite of tragedy, their daughter was covered in love every moment of her life.

Lindsey wrote, “For those who wonder whether it is truly worth it to carry a child to term who has little chance of survival outside the womb, it is worth it beyond what words could say.”

Other parents share her sentiment. A woman named Annette said, “I really have a peace that we carried her to term. I know in my heart that I have given my daughter all that I could and loved her every day of her life.” Jamie shared, “My entire family wanted me to terminate (I still can’t bring myself to write ‘abort.’). They thought it would be easier on me. In the end everyone was so glad I decided to continue. We all fell in love with her.” A father, James, stated about his daughter, “She didn’t bring sadness. She brought joy, utter joy.”

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Pro-abortion activists frequently use families facing a terminal prenatal diagnosis as pawns to somehow justify allowing late-term abortions. The truth is abortion doesn’t help the grief process, but instead compounds it. Abortion actually increases the risks to the mother’s physical and mental health. Instead, these grieving families deserve compassionate care and affirmation that their child’s life has value and is a cherished part of their family.

LifeNews.com Note: Bradley Mattes is the executive director of Life Issues Institute, a national pro-life educational group.