Losing Spencer: A Mother’s Story of Grief & Life After Losing her Infant Son to Hirschsprung Disease
EPISODE: 24 | DATE: January 7, 2021
Birthdays, death anniversaries, Mother’s Day, Fathers day…it’s not that we grieve harder on those days. Maybe just a little louder. It’s not worse than yesterday. I don’t miss them more yesterday than I do today. It’s just a little louder today.
- It took 18 months and 2 miscarriages for Randi Deskin and her husband, Joshua Landau, to conceive their son, Spencer.
- He was born on March 12, 2019.
- He passed away just 10 days later from an undiagnosed case of Hirschsprung Disease
- Hirschsprung Disease which is described as a lack of ganglion nerve cells in a baby’s intestines. What this means is that the baby doesn’t have cells to push out the stool or the sensation to do it themselves.
- 1 in 5000 babies will have Hirschsprung Disease. There is both a genetic familiar version and a random version.
- Spencer had a random version.
- By and large, most babies do not die from Hirschsprung Disease. It is something that should be caught within the first few days of life. The biggest symptom is not passing stool within the first 24-48 hours.
- Since Spencer’s passing, Randi and Josh have made it their mission to give back. They created the Spencer Julius Landau “Little Warrior” Endowment Fund for the Montreal Children’s Hospital Pediatric Intensive Care Unit and have since raised over $100K in his name for the hospital.
- Randi and her husband both grieved in their own ways, and they also grieved together. They vowed not to let their son’s passing break them apart.
- Their biggest fear is that Spencer will be forgotten, and so they keep him alive by going to visit him in the cemetery every day, by donating in his name, and in sharing his story in hopes that in doing so, it might save a life.
- Grief has no timeline. The best way your friends and family can show up for you is to just be there and understand that grief comes in waves and in all different shapes.
- Randi and Josh are very active in the perinatal and infant loss community, and in going through their loss, they noticed that there isn’t much support for the dads. They started a support group for men dealing with perinatal and infant loss (the information is below).
- This past July, Randi and Josh got a call from a friend from high school letting them know that because they shared Spencer’s story, it saved their baby’s life 🙂
RANDI’S HOSPITAL CHECKLIST
Resources in this episode
W.A.M – We Also Mourn – Support group for men struggling with infant death (see image above).