Clinical Care

Clinical care for families experiencing a perinatal loss varies greatly among different facilities and providers. Health professionals should be equipped and comfortable discussing all options for care with families in a neutral and caring manner. Consideration of psychosocial factors is also appropriate when planning care for grieving families.

The goals for physical care during perinatal loss aim to provide competent and compassionate care, minimize regrets, avoid adding further distress, adjust as the family’s needs change, and support the family moving forward in their grief journey. This can be done through testing and treatments, timing and mode of delivery,
pain relief options, lactation management, memory making activities, disposition guidance, discharge planning, and appropriate follow-up.

Labor and delivery

Shared decision-making is vital when determining the optimal mode and timing of delivery. Early pregnancy losses can be managed with expectant management, medication, surgical delivery, or induction of labor. IOL and vaginal birth have the lowest medical risk for women. Between 14-24 weeks, IOL has an increased risk of infection over D&E, but a parental desire to see/hold their baby should be considered.

Vaginal delivery is recommended over cesareans because it promotes a faster recovery and hospital discharge, but c/sections may be clinically indicated in loss situations. Women who delay labor more than 48 hours after diagnosis of the baby’s death should be monitored with twice weekly testing for DIC.

All pain relief modalities should be available to pregnant women with perinatal loss. Sedation should be discouraged to avoid memory gaps and later regrets.

Memory Making

Studies indicate that parents find the time with their babies the most valuable aspect of their time in the hospital setting. Many may be hesitant or nervous about seeing and holding their baby, but they later share that they were glad they did and appreciated the health professionals supporting and encouraging these activities.
The baby should always be treated with respect and in a manner that is consistent with care for a living baby. Memory making can include this time with the baby, parenting activities done with the baby (ie: bathing, dressing, reading to, or rocking the baby), or creation of mementos (ie: hand and footprints, photographs, etc.).

Families can also be encouraged to participate in memory making activities outside of the health care setting. Examples from loss families include planting a tree, holding a memorial service, candle lighting, creating new traditions, getting tattoos, purchasing meaningful jewelry, or listening to music that reminds them of their baby.

Disposition

Many antenatal deaths are not eligible for vital organ donation, but some options may exist if desired by the family. Neonatal deaths may be eligible for organ donation based on the cause and timing of the death.

In most states in the U.S., families are not responsible for a baby’s remains if under 20 weeks gestation, but they are responsible if the baby is over 20 weeks gestation or born alive. Families may request to manage remains under 20 weeks, but may need to work with the hospital and/or a funeral home according to the facility policies. Over 20 weeks or in neonatal deaths, the families must usually decide if they want a hospital cremation or private cremation or burial using a local mortician. Financial and memorial implications should be discussed with the family before decisions are finalized. If a family wishes to take their baby home prior to burial or cremation, this is allowed in most states. However, it may require the cooperation of a local funeral director as most hospital facilities require that human remains only be released to licensed morticians.

Discharge

Lactation is possible after 16 weeks gestation and can be a traumatic experience for loss families. Postpartum care information should include details about milk donation or suppression. Other postpartum teaching should discuss bleeding, wound care, contraception, activity restrictions, and mental health care. Written information specific to loss families and the type of loss is preferred. A follow-up plan should be created with specific information about when the family should return to care or when they can expect to hear from their health care team next. Leaving the healthcare setting without their baby is extremely emotional for families. Work with them to create a plan that they are comfortable with and that respects their wishes for their baby.

Recommendations

• Families should receive all available information when making decisions
• Families should be offered private entrances/exits, waiting rooms, or patient-care rooms to provide privacy and minimize interaction with families in happy pregnancies/deliveries
• The pros and cons of all delivery options should be discussed with the family including time needed for recovery and ability to see the baby.
• Pain control options should be discussed, even if decisions had been made previously.
• Avoid over-sedation that could cause memory lapses
• Immediate delivery is usually not necessary, but postponing delivery for more than 24 hours can increase the risk of long-term anxiety symptoms
• Offer suggestions on lactation management including donation, suppression, and pain management.
• Provide a variety of memory making options for families and encourage them to use their own ideas. Ensure the family has practical and emotional support for these activities as desired. The most common activities include seeing/holding the baby, dressing/bathing the baby, reading a book,taking photographs, collecting mementos such as hand and footprints, crib card, or lock of hair.
• Offer to include spiritual care or local religious and cultural leaders in appropriate traditions or rituals
• Provide information to families about memory making activities that can be done later, without the baby’s body, or outside the medical setting. Examples of these ideas include planting a tree, holding a memorial service, and lighting a candle.
• Families should be provided with information and resources for disposition options.
• Discharge planning should include information on physical recovery, bereavement services and resources, follow-up plan, and information about next steps with the baby’s body.
• Ensure the baby’s body is handled respectfully and in accordance with the family’s wishes
• Families should be allowed to decide how/when they would like to leave the health facility, with recognition from health professionals that this is a significant moment for most families.
• All appropriate documentation should be completed, including information about Birth, Death, or Stillbirth certificates.
• Consider home-health nurse visits for the family after discharge