Barb Himes, CD

The holiday season is a time of year for gathering, celebrating, and looking to the coming year, but it can also be a time filled with potential triggers for individuals and families who have suffered a loss. 

For maternal and infant health care providers, this may mean helping parents who have lost an infant and are grappling with confusion, guilt, and grief and wondering if they will ever be happy again or if they should have another child. 

The cause of this grief could be immediate, but it could also be in different levels of the past. In March 2022, the American Psychiatric Association (APA) released the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DMS-5), which now includes an entry for Prolonged Grief Disorder. This may be diagnosed for adults experiencing symptoms of grief for more than a year following the death of a loved one. The symptoms may include emotional distress and difficulties carrying out daily activities. 

This classifying longer-than-a-year grief as a disorder has prompted some discussion within the healthcare community; the DMS-5 inclusion may help improve access to insurance coverage, but there is also a concern that calling it a disorder may not accurately reflect an individual’s own way of coping with such a death. 

In a recent New York Times article (1), author Jill Balosky, who lost a family member to suicide, agreed, declaring that “grief is a forever thing.” At First Candle, we have seen that even if parents are able to resume their daily lives, the grief of losing an infant never goes away, even after many years. 

Suggested treatments for Prolonged Grief Disorder involve elements of cognitive behavioral therapy (CBT) as well as bereavement support groups. First Candle has found through its bereavement work that support groups can indeed fill a need and that it is helpful to offer different forms of support, enabling individuals to choose which is most comfortable for them: 

• Grief line. This can offer one-on-one support, access to materials, and local support services where they are available. Bereavement library. Resources on surviving the sudden death of a baby and guidance on coping with anniversaries, birthdays, holidays, and considerations about having another child. 
• Peer-to-peer online support groups. A safe and supportive environment for individuals and families to talk about pregnancy and infant loss. The groups provide an empathetic outlet for feelings of grief, anger, anxiety, and depression, with shared personal experiences, emotional comfort, and moral support. There are different groups for Sudden Unexpected Infant Death (SUID), stillbirth, and miscarriage. 

The APA also notes that those suffering from Prolonged Grief Disorder may not seek help independently. This can be true whether the loss is recent or not; some individuals may need a healthcare provider’s intuitive help in recognizing their emotional situation and in understanding the benefits of accepting help. 

This type of counseling may be challenging for some professionals who may not have training in bereavement support and whose focus has been on saving lives, not death. But some simple approaches can help both the provider and the individual work together. Some may not be needed if the death is not in the moment or recent, and some will still be relevant if the individual is still suffering after some time. 

• Listen. If the individual wishes, let them talk and then fully listen. 
• Be open and sincere. “I care and am here for you.” “I am so sorry.” 
• Recognize. Say the baby’s name. 
• Offer keepsakes. A lock of hair, foot, and handprints, pictures. 
• Avoid clichés. “It’s God’s will.” “God needed another angel.” “At least you have your other children.” 
• Explain. Share what may happen next (e.g., if SUID: autopsy, coroner, funeral, etc.) 
• Identify grief support resources. This could be a local support group, a hospital chaplain, or a First Candle support service. 

There are also suggestions that we have found to be helpful, especially during the holidays: 

• Sometimes the anticipation around an impending holiday is worse than the day itself turns out to be. 
• It is also a helpful idea to have a personal plan that includes:
  • Getting plenty of rest 
  • Exercising 
  • Making time for yourself or the things you enjoy 
  • Being kind to yourself 
  • Doing what you are comfortable with and declining invitations you are not 

Other elements to consider are: 

1. Do not be afraid to change traditions or add to existing ones 
2. Light a candle 
3. Add a special ornament or decoration in memory of your baby 
4. Donate a book to a hospital, church, or public library 
5. Volunteer during the holidays 

And, in general, being fully engaged with an individual or with families may help the professional understand in which directions their interactive discussions and support may go. While there may be feelings of guilt, anger, fear, and depression common to all, everyone processes grief differently. Infant death can have an impact on the parents’ relationship, on the immediate and extended family, and also on the health care providers themselves. 

And providers may see a new flare-up of grief when certain triggers, such as holidays, occur. 

There is no timetable for the cessation of grief. 

References: 

1. Grief Is A Forever Thing, The New York Times. https://www.nytimes.com/2022/11/27/opinion/prolonged-grief-suicide.html

Disclosure: The author is a Certified Doula, and the Director of Education and Bereavement Services of First Candle, Inc., a Connecticut-based not for profit 501(c)3 corporation.