Despite worldwide efforts to promote safe sleep over the years, sudden infant death syndrome (SIDS) continues to be the leading cause of post-neonatal infant mortality in every advanced country in the world. More infants die from unexplained infant deaths each year than children zero through 18 die from cancer.
Robert’s Program at Boston Children’s Hospital
Richard Goldstein, MD is often the first person bereaved parents turn to after the sudden and unexpected death of their child. As the co-founder and director of Boston Children’s Robert’s Program, Goldstein works to find answers, providing comprehensive clinical care that includes enhanced diagnostics, genetics, future risk assessment and support for families. And most importantly, he listens. “Those initial meetings are extraordinary,” says Goldstein. “These parents feel devastated, accused and isolated — a total loss of their moorings. It’s a difficult place to go, but I do, because I want to see if I can find something, anything, to help.”
Read about the High family, Goldstein and Robert’s Program in the recent STAT article, ‘Their baby died during his nap. Then medical bureaucrats deepened the parents’ anguish.’
Five years ago, while continuing to care for families in the clinical setting, Goldstein embarked on an in-depth study of how bereaved families experience grief over time. This research was important because characteristics of the loss and the parents’ relationship to their child at the time of death concentrate many risk factors for prolonged and sustained grief.
“So much of grief research has focused on the Kubler-Ross model — this idea that eventually everyone comes to accept loss and integrate it into their lives,” says Goldstein. “But it is not correct to say that parents in these circumstances ever gain acceptance of their infant’s death, nor should it be expected. They experience severe grief that challenges their sense of self and their assumptions about the world. The way they integrate their loss into their lives is by finding ways to keep their baby’s legacy alive.”
Studying and identifying prolonged grief
Between 2013 and 2016, Goldstein followed 12,000 pregnancies that resulted in 50 cases of SIDS, and then followed the 50 bereaved mothers for three years after their loss. He measured various psychological parameters during pregnancy, at a time when the mothers weren’t already thinking about death:
- History of depression
- History of anxiety
- Previous loss
- History of alcohol use
- Maternal age
- Presence of another child in the home
He found that, one year post-loss, 60% of the mothers experienced prolonged grief disorder (PGD), which is when a person is so impaired by their grief that it significantly impacts daily function and activities. In comparison, just under 10% of people who lose a life partner experience this type of debilitating grief at that time.
Goldstein was also able to identify risk factors that most contribute to a mother developing longstanding problems: history of depression, higher alcohol intake and older maternal age. “I did this,” Goldstein says, “hoping we could identify these mothers and intervene.”
Take away for pediatric primary care providers
The opportunity to identify mothers at risk of experiencing PGD often presents itself to those on the front line. “It would be a very positive development if pediatricians could expand their roles to identify these mothers,” says Goldstein. It starts with being brave enough to face the uncomfortable and following some straightforward advice:
- At the time of the child’s death, don’t be afraid to reach out and talk to the parents. Send a card, make a phone call, attend the funeral.
- In the months afterwards, make time to sit down and talk to the grieving parents. During this period, they may be confused, full of anger and self-blame. Just listening and reserving judgement can help.
- Help parents understand the concept of liminality — that life as they knew it is over and though they know there’s another side, they may have no idea how they’ll get there. Be honest about how life-altering this experience is and that you are there to help get them to the other side.
- Understand the differences between grief and prolonged grief. Review the risk factors for PGD and be able to identify an at-risk mother.
Once you identify someone as at risk for developing PGD, get them into formal counseling and support groups with other bereaved parents. Follow up to see whether the recommended supports are in fact helpful.
As difficult and unfair as these circumstances are, a remarkable thing can happen, says Goldstein. “Even though these mothers continue to suffer so much, this personal catastrophe often becomes the foundation for living a really good life — one that matters, that’s aware of other people, that affirms family, that doesn’t take things for granted and that encourages a greater presence.”
Learn about Robert’s Program.