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
As we discussed in the episode, here is a quick list of things you’ll want to look out for after having a baby and before leaving the hospital. This is by no means a complete list. Please email me at firstname.lastname@example.org to add to it if you see something missing. The biggest one as it pertains to this episode is making sure the baby is passing stool normally.
-Eat without regurgitation
-Pass stool independently (without stimulation) within the first 36 hrs and do not leave the hospital until that happens
-Newborn Hearing test
-Peadiatrician visit within the first 24hrs
-If breastfeeding make sure that the baby is latching confidently (nurses must help with this)
-Make sure mother passes urine and a bowel movement
-Make sure mother is checked vaginally and if c section the incision is checked thoroughly to avoid infection
-Proper swaddling technique to ensure the baby safety
-Make sure baby is in car seat safely
Randi is a professional pastry chef and mom of two boys from Montréal, Quebec (Canada). As she says of her two boys, “One here in my arms, and one in heaven.” Her first son, Spencer, passed away in 2019 from Hirschsprung Disease. Her second son, Samuel, was born in August of 2020. Randi is a major advocate for both women and men who struggle with infertility as well as with infant and perinatal loss. She and her husband, Josh, started an infant and perinatal loss support group after realizing there was not much support for father’s going through this kind of loss.
Resources in this episode
The Spencer Julius Landau “Little Warrior” Endowment Fund
W.A.M – We Also Mourn – Support group for men struggling with infant death (see image above).
Thank you so much for listening!
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