"I cannot put to words how that felt being a nurse and not being able to help; there's a level of helplessness when you're taking care of a baby who is dying, but it is even worse when you can't impact their experience in a positive and healthy way. All of those experiences together sparked Walk with You."
We are proud to be joined by the founder and president of Walk with You Kylie Collins. This episode tells the story of Kylie's work within a Neonatal Intensive Care Unit (NICU) and how this experience shaped Walk with You's creation. Walk with You is an organization dedicated to walking with families as they experience the loss of a child from pre-birth through 18+ years of age.
A 2017 study documented in Pediatrics, the official journal of the American Academy of Pediatrics, highlighted that burnout - defined as a state of fatigue, detachment, and cynicism resulting from prolonged high levels of stress - “affects 25 to 50% of Neonatal Intensive Care Unit providers, with up to one-half of nurses and physicians meeting criteria for severe burnout in all specialities.” A 2020 article in AACN Advanced Critical Care titled Moral Distress, Mattering, and Secondary Traumatic Stress in Provider Burnout discusses, as the title suggests, common reasons for burnout. The authors noted that mattering, described “as the perception that one makes a difference in the lives of others and is somehow significant in the world,” is a critical component associated with avoiding nurse burnout. Moral distress, which the authors say “occurs when clinicians are constrained from taking what they believe to be ethically appropriate,” can lead to “helplessness” from providers, who we should remember are people. Kylie's story is at the intersection of these two things.
Through my volunteer work, I have encountered parents who have lost unborn children, longing for the life that could have been; I have met parents who have lost a child to suicide, grieving for a life lost too soon; and I have met members of amazing organizations working to support these families and during their grief journey.
Walk with You provides two models with three levels of support.
Models of support include the Equip Model (equipping you with tools for your needs) and the Engage Model (supporting you directly at each step), each with the support of a Bereaved Parent Mentor and Bereaved Services Coordinator by your side.
- Anticipatory Loss: Your bereaved parent mentor and bereaved services coordinator will meet with you and your support system to discuss upcoming last moments and experiences with your child.
- New Loss: Your bereaved parent mentor and bereaved services coordinator will meet with you and your support system to advocate for, help plan, and coordinate your child’s memorial service.
- Enduring Loss: Your bereaved parent mentor and bereaved services coordinator will continue walking with you through the first year following your child’s funeral.
Looking for that Spring Fundraiser we talked about in the episode? Be sure to register on their website!
Please consider listening in, joining in the conversation, and most importantly always remember, you are loved, you are needed, you are appreciated, and you should never feel like you have to walk alone!
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