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A baby's birth is a time for new beginnings and possibilities, but there are some occasions when parents, through prenatal testing, know their baby has a lethal condition. The Fetal Concerns Program at Children's Hospital of Wisconsin helps families cope with the loss of their baby while offering a full range of support and planning services.
Steven R. Leuthner, MD, MA, is a Medical College of Wisconsin Associate Professor of Pediatrics and Bioethics in the division of Neonatology at the Medical College of Wisconsin. Dr. Leuthner also serves as Medical Director of the Fetal Concerns Program at Children's Hospital of Wisconsin.
Dr. Leuthner says about 10 to 12 percent of the Fetal Concern Program's time is spent caring for families whose babies will die. "As intensivists, we all deal with babies who are going to die. Partly with my ethics background and dealing with sick babies, I began to look at palliative care and began to see a need," he says.
The Fetal Concerns Program started in 2000 when the first nurse was hired as a program coordinator. More staff has since been added, Dr. Leuthner says, and the program has become "a great resource for the families." It is the only program of its type in Wisconsin.
Support for Families Crucial
Dr. Leuthner said palliative care should begin with questions about how the professional team can best answer and meet those needs. "When we have a fetal diagnosis that we consider lethal, how do we treat that family? How do we make sure we maximize comfort and medical support for the baby as needed without doing things the family doesn't want done? How do we support the spiritual, psycho-social and the pragmatic?"
When a prenatal diagnosis is fatal, decisions must be made. Many families are not prepared to make the decision about whether to continue to term or deliver early or end the pregnancy. "It's difficult because we are stepping on the abortion debate a bit and some people get uncomfortable," Dr. Leuthner says. "What we do is have open conversations with families. I try and help them explore their convictions about the issue. In the end we're going to have a baby who's going to die, and in the end, we want a mom who's healthy in all ways."
No matter what the woman's decision is, the program offers her and the family support. "There are women who have told us they will continue until term and let nature take its course because that's their time to be with the baby," Dr. Leuthner says. "We try and tell people 'you wanted this child, you were hoping for this baby and you love this baby - you're doing whatever you're doing for a loving reason.'"
Planning for Birth卆nd Death
Each family has the opportunity to participate in a palliative care plan which includes medical, social and spiritual decisions. The Fetal Concerns Program nurse coordinator acts as the primary case manager and provides a vital point of contact for the family. By listening to families who have gone through the loss of a newborn, the program has learned to provide services and options which are sensitive to the family's needs. "The nurse is someone who knows the family's story, someone they can trust," Dr. Leuthner says.
Deciding how the baby will be transported to the funeral home is just one of the many ways families can cope with their loss. "It hasn't been explored a lot in the literature, so as we've been challenged by our obstetricians to bring the palliative care to that level, we've done it and successfully," Dr. Leuthner says. In some cases, the family may decide to transport the baby themselves or to have funeral home personnel come directly to the room so the baby does not have to go to the morgue.
Families are encouraged and empowered to make choices about their newborn's end-of-life care. Each family is encouraged to name their baby, take photos and hold a memorial service or any other ways to honor and remember the baby.
Care Continues After Loss
The care provided by the Fetal Concerns Program team continues after the death of the baby. Support groups for women, men and even children are available and encouraged. There are also support groups for women who choose to end their pregnancies early.
"We're there for the next pregnancy when they're so worried," Dr. Leuthner says. "Most of the time in those scenarios, we're there to celebrate a healthy pregnancy."
The feedback from families who have been part of the Fetal Concerns Program has been very positive. The program is funded by the Medical College of Wisconsin, Children's Hospital and Froedtert Hospital. "I have to give the people at Froedtert, the Medical College of Wisconsin and Children's Hospital in particular wonderful words of support," says Dr. Leuthner. "They're willing to support the program because they know it's the right thing to do."
Melissa Rigney Baxter
HealthLink Contributing Writer
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