Losing an infant sibling impacts surviving brothers and sisters
When I was working on my book, The Empty Room, 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)
Not long ago, I got off a plane in Phoenix and confronted the words “Ted is Here,” painted on a pillar in bright orange. I almost cried. Ted, I realized, was the name of a budget airline. But it was also my older brother’s name.
My Ted died of an immune disorder 27 years ago, when I was 14 and he was 17. His story, along with that of another boy in Texas, were merged in the movie “The Boy in the Plastic Bubble.” (Which my family did not authorize.)
Like most people who’ve lost someone they love, I’ve always wanted him back, or at least present, in some way. As a kid, I wished for a spectral sighting. As a young adult, I sought out psychics and mediums, one of whom once instructed me to ask Ted to give me signs that he was still present. Once, I asked Ted to show me a clown. Two days later, at a coffee shop, I looked up and realized I was sitting under a clown mural. My elation was short-lived, however. Had Ted contrived it, or had I unconsciously found myself a clown?
I’m not making a case for the supernatural here. But seeing that “Ted is Here” sign gave me the old I-see-the-clown feeling again.
This blog, which I’m launching on May 27th, the anniversary of Ted’s death, is an invitation to those who knew him—and those who didn’t—to share their thoughts and memories about the Ted they knew, or the Ted they imagined. Hearing about him, knowing that others are carrying a bit of him around with them, is another way of keeping him present. Honestly, I’d like that much better than seeing a clown.
I’ll also be posting thoughts and commentaries on siblings, sibling loss, families and grief—subjects I have, not surprisingly, become interested in. And for those of you who’ve read my book, The Empty Room, which tells my story and those of others who’ve lost siblings, I welcome your thoughts and messages.