AAP Voices Blog

Two years ago, a passing fire truck captured my then 3-year-old daughter Tessa’s attention. She didn’t comment on its spinning lights or blaring siren, like young children often do.

“There’s the truck that takes kids to heaven,” she said.

On October 25, 2016, our healthy son Conor inexplicably died in his sleep. He was 17 months old. In addition to our own mourning, we have had to manage the grief and questions of Tessa, who suddenly and unexpectedly lost her younger brother, her best friend, her constant companion. How could we answer her questions when no one could answer ours? How could we make her understand what our adult brains could not comprehend?

As a pediatrician, there was nothing in my training that prepared me for the death of my son, and nothing that taught me how to support Tessa through the loss of her brother. Conor’s cause of death was undetermined. Our questions brought us to the SUDC (Sudden Unexplained Death in Childhood) Foundation. SUDC is the sudden and unexpected death of a child 12 months of age or older that remains unexplained after a thorough death investigation. According to CDC data, it affects approximately 400 children annually, making it the fifth leading category of death in children ages 1 through 4. Yet it remains a gap in our current medical education, leaving us inadequately prepared to support families and siblings through this tragedy.

When a child dies, siblings are often referred to as the “forgotten mourners.” They are left to grieve their sibling while also experiencing what feels like the loss of their parents as they mourn. Siblings may experience a wide range of emotions, varying from sadness to anger and even seeming indifference.

As children age and pass through different developmental phases, they may reprocess their grief and it may appear as if they are re-living their loss. We have experienced this first hand with Tessa. As a 3-year-old, she was most preoccupied with where Conor had gone and why we couldn’t bring him back. Now, as a 5-year-old, her questions are more abstract and detailed. Did he want to leave us? Will her younger sister Isabelle die? If we didn’t know Conor was going to die, how can we be sure she and Isabelle will not?

Recognizing this path of grief is important for pediatricians to ensure that surviving and subsequent siblings are receiving adequate support--not just in the immediate aftermath of their sibling’s death, but also in the months and years that follow. It also is important to recognize that children born after their sibling died can still experience grief, as their family dynamics have been forever changed.

Pediatricians are in a unique position to help support these children and ensure they receive adequate intervention. Placing a flag in the siblings’ chart can serve as a reminder to check in at annual physicals. Pediatricians can make referrals for age appropriate books, discuss strategies for parents to explain death and grieving in developmentally appropriate ways with the child, facilitate referrals for age appropriate grief support groups or camps, and when necessary, make referrals to mental health professionals. It is important for pediatricians to be aware of and educate parents on normal grief responses in children at different developmental stages and to screen for any red flags that may call for further intervention.

"In addition to our own mourning, we have had to manage the grief and questions of Tessa, who suddenly and unexpectedly lost her younger brother, her best friend, her constant companion. How could we answer her questions when no one could answer ours?”

One of the best ways for us to handle Tessa’s questions was to connect with other parents who had navigated this path. At a retreat for families affected by SUDC, we saw the power of connecting siblings who had a shared experience of loss. We soon discovered that there were no “right” answers, but there was comfort in talking with other families.

The SUDC Foundation funded a grant for a collaboration between the AAP and the National Association of Medical Examiners to create consensus guidelines for the investigation of sudden deaths in pediatrics, including recommendations for the care of families affected by these deaths. These guidelines are anticipated to be published within the next year and will be a valuable resource for pediatricians.

I remember someone telling us that Tessa would be too young to remember her loss. This felt like a stab through the heart. Our worst fear was that she would forget Conor. While we wish we could erase her pain, we would never want her to forget her brother and their special bond. The intense heartbreak of losing your child and being left without answers is compounded as you watch your surviving children grieve.

However, in watching Tessa grieve, we also see great love. Shortly after Conor died, we saw the most beautiful sunset and Tessa told us Conor had painted the sky pink for us. Sunsets have now become a special manifestation of their everlasting connection.

When we see grief as a manifestation of love, we destigmatize it. In order for children to talk more openly about grief, we need to provide a forum for these discussions. Pediatricians should not steer away from the difficult questions of asking about sibling loss, but rather provide an opportunity for children to share their feelings and memories.