Perinatal Hospice

A perinatal hospice provides a special service during one of the most difficult situations a family can go through: The death of a baby. In some cases, this death is sudden and unanticipated – a stillbirth or a fatal condition not diagnosed during the pregnancy. However, in many cases, perinatal hospices serve families who know that their baby is going to die either sometime during the pregnancy or shortly after birth. These families have made the difficult choice to continue with the pregnancy until the baby dies or the pregnancy is full-term.

In the past, families who made the decision to continue carrying a baby with a terminal diagnosis were left to cope on their own as best they could, sometimes even with the disapproval and censure of their medical team. Now, however, these families can turn to a perinatal hospice for support during a heartbreaking time.

A perinatal hospice is like its adult counterpart in that it seeks to give every dying individual a comfortable and dignified death without deliberately prolonging or shortening the his or her natural life. Perinatal hospices focus specifically on babies who are dying or who will likely die before, during, or after birth. Conditions that may require hospice services include:

• Anencephaly
• Major heart defects
• Amniotic Band Syndrome
• Harlequin Syndrome
• Bilateral Renal Agenesis or Potter's Syndrome
• Fetal Hydrops

Pregnant women and their families are ideally referred to hospice care soon after they receive the news that their baby will not survive. Hospice personnel can help parents begin to understand the implications of their baby's diagnosis and their own feelings of fear, loss, and anger. The hospice workers can also begin assisting the parents with more practical concerns, including pregnancy and birth planning, funeral arrangements, and making hospital staff aware of the family's wishes for their medical care.

In addition to the emotional and practical support already mentioned, a perinatal hospice can provide home care if the baby does survive for a while after birth. A nurse comes to the house, takes the baby's vital signs, assists with feeding and wound care if open wounds are present, and answers any questions that parents and other caregivers may have.

The hospice's social workernhelps the family work through emotional issues, but can also refer the family to other social service organizations as needs arise. For some families, a complicated pregnancy and birth may be a financial burden, and the hospice social worker can refer to local or national organizations that provide financial or other practical assistance.

Most hospices also have clergy available who help families with spiritual issues. Moms and dads may feel their faith and religious beliefs shaken by the devastation of losing a baby, and the clergy can help them identify, sort through, and learn to come to peace with these feelings.

Hospices also offer bereavement care in the form of individual counseling, grief support groups, and educational materials and sessions. Bereavement care generally extends through the first year after loss, although follow-up care may be provided for longer periods of time.

Parents generally prepare a birth plan with the help of perinatal hospice workers that identifies how they'd like the birth and aftercare handled. Since no one really knows how much time a terminally ill baby will have after birth, or even if the baby will survive, parents and medical staff have to prepare for every eventuality. The hospice staff will likely urge the parents to spend as much time as possible with their baby while he or she is alive, forgoing routine procedures that would usually separate mother and baby after birth. Hospital staff may give the baby comfort care, keeping it warm and possibly feeding it, but no invasive life-saving procedures are performed.

Not every hospital has a separate hospice service for expectant families, although some may offer additional services for families who have lost babies or children. Some families choose a hospital for delivery based on the presence of a perinatal hospice program. These services can be very valuable for a family going through the trauma of losing a baby before, during, or after birth.

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