Former transplant nurse’s daughter now waits on recipient list
By Lethbridge College on April 7, 2021.
As a young nurse on a transplant team, Melanie Hamilton learned first-hand how important organ donations are.Two decades later, she’s experiencing a new perspective, as her youngest daughter, Erin, awaits a life-changing liver transplant.
“It’s beyond surreal,” says Hamilton, an educational development specialist at Lethbridge College.
“I know what it’s like to see that family come in and the panic they must have when you’re taking an organ out and putting another organ in.
“I’ve seen it from the donor perspective. And now I’m seeing it from the parent perspective and a child needing the organ.”
At the age of three, Erin — now 14 — was diagnosed with a rare metabolic disorder called urea cycle deficit OTC (ornithine transcarbamylase deficiency).
Found in about one in 80,000 people, she is missing one of six enzymes needed to breakdown protein. The protein stays in her system, eventually turning to ammonia, a neurotoxin that can cause vomiting, headache or even brain damage.
Though some people with this condition can manage their whole lives with a restricted diet and medication, Erin began having complications last year.
She can eat up to seven grams of protein spread out over the day, the amount found in three slices of bread, but medication she takes five times a day to help her digest even this amount of protein started giving her side-effects.
Erin has been in hospital more than 200 days since January of 2020.
Nearly a year and a half of her life has been spent in hospital, off and on.
“Erin’s amazing,” Hamilton says. “She’s so brave, and she never complains. She’s tenacious and sassy and resilient and empathetic. She’s got a generous heart and she loves with all her might.”
Erin will stay in hospital at Alberta Children’s Hospital in Calgary until she gets the call that a donor liver is available.
When they get that call, she and her mom will have no more than two hours to pack and will be airlifted to Edmonton, where an eight-hour surgery will begin.
Hamilton is now living in Ronald McDonald House, a short walk from Erin’s hospital bed.
Due to COVID restrictions, her husband, Cliff, can visit Erin, but their two older daughters — Abbey, a Lethbridge College student, and Avery, in Gr. 11 at Catholic Central High — have to keep their distance.
Managing a family divided has been tough, Hamilton says, and there is no end in sight.
A donation could happen tomorrow or be months away and after the surgery, Hamilton and Erin will be living in Edmonton for at least three months of recovery and monitoring.
“We always knew that a transplant was the one thing that could cure the disorder,” Hamilton said. “But there are a lot of pros and cons to transplant. In 2021, we’ve only been out of the hospital for 18 days.
“She can’t go on like this.”
Hamilton has always been a proponent of organ donation because of her early career experiences. She hopes her family’s story might encourage others to consider it.
“Make sure you sign your donor card, and make sure your loved ones know you value organ donation,” she said.
To register or for more information about organ donation, visit the Alberta Organ and Tissue Donation Registry.
Colleagues of Hamilton’s have also set up a GoFundMe to help with costs associated with living away from home for this extended period.
Lethbridge College will recognize Green Shirt Day in honour of local hero Logan Boulet by encouraging its campus community to wear green today and raising awareness of organ donation. 2
-1
