When I was working on my book, I interviewed a couple of people who either lost siblings very early in that sibling’s life, i.e. in infancy (and were thus very young themselves) or who were born after the death of an infant sibling. I didn’t have enough people to make a huge case, but it was very clear to me that these were very significant losses.

Sadly, however, because these people had been so young at the time, or were born after the death, few had ever acknowledged them as “real” mourners. Result: Disenfranchised grief. They were often confused about what had happened (they’d been too young to remember, or not born yet, and no one had told them the full story), confused about their role in the family, sad, and left with the sense of not being entitled to their feelings of grief.

So I was very interested to see a recent study out of Dartmouth that studied people who lost infant siblings in the Dartmouth-Hitchcock Medical Center NICU. Researchers (who included sibling researcher Joanna Fanos, PhD, a bereft sibling herself) interviewed 13 adults and 1 adolescent who’d either lost an infant sibling in the NICU between 1980 and 1990, or were born after the loss of an infant sibling there.

What they found: The surviving siblings shared a sense of confusion surrounding the memories of the event and high anxiety rates. Those born after the child’s death reported a lack of communication within the family about the death (pretty much the norm in sibling loss, sadly) and a sense that their parents had never mourned the loss (also very common).

“Many participants felt that counseling would have helped their parents,” said Fanos,” in a Dartmouth press release. Medical providers and family members alike should consider psychological counseling to gain insight into the emotional responses to death in the NICU.”

I can see why this issue has been over-looked. Parents are distraught (as they always are after the death of a child). Young siblings are often assumed to be incapable of mourning. Children born later never knew the lost one. But the truth is, it’s a real loss, it matters. And what parent would knowingly allow their surviving children to suffer, un-helped?

I imagine just telling parents that surviving children, and children born thereafter, will mourn the loss, would be a start.

(Source: Dartmouth Medical School: The Journal of Pediatrics: May 2009)

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Elizabeth DeVita-Raeburn

Elizabeth DeVita-Raeburn is the author of The Empty Room: Surviving Sibling Loss, a memoir and journalistic exploration of sibling loss. Her brother, Ted, suffered from a rare immune deficiency disorder and spent 8 years in an isolation room behind a plastic curtain before he died. He was one of two boys upon whom the movie “The Boy in the Plastic Bubble” was based. She is a contributing writer for More magazine, and has also written for Self, Discover, Psychology Today and Harper’s Bazaar, among other publications. Elizabeth is currently working on a new book, The Death of Cancer, with her father, Dr. Vincent T. DeVita. She lives in New York City with her husband, writer Paul Raeburn, and her son, Henry. To learn more about Elizabeth and her work go to: www.devitaraeburn.com or visit her blog: www.tedishere.blogspot.com Elizabeth appeared on the radio show “Healing the Grieving Heart” discussing the Death of a Sibling. To hear her interviewed by Dr. Gloria & Dr. Heidi Horsley, click on the following link: www.voiceamericapd.com/health/010157/horsley070705.mp3

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