As a nurse in her early 20s working on a transplant team at University of Alberta Hospital, Melanie Hamilton never dreamed she’d one day find her daughter on a transplant list waiting for a liver donation.
“It's beyond surreal,” says Melanie, an educational development specialist in Lethbridge College’s Centre for Teaching, Learning and Innovation. “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.”
Melanie’s youngest daughter, Erin, was diagnosed at age three with a rare metabolic disorder called urea cycle deficit OTC (ornithine transcarbamylase deficiency). Found in about one in 80,000 people, Erin, 14, 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.
Tube fed to ensure she gets the calories she needs to function, Erin’s limited to seven grams of protein a day – and even that small amount can’t be consumed in one sitting. Three slices of bread – not something you’d think of as a source of protein – contain those precious seven grams.
Some people with this condition can manage their whole lives with a restricted diet and medication, but Erin began having complications last year. The medication she takes five times a day to help her digest tiny amounts of protein started giving her side-effects. Since January 2020, Erin’s been in hospital more than 200 days. Nearly a year and a half of her life has been spent in hospital, off and on. Eighteen strings of brightly coloured “courage beads,” each one representing a procedure performed on Erin in hospital, have nearly overtaken her IV pole, a reminder to all about the difficult journey she’s travelled.
“Erin’s amazing,” Melanie 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.”
While in hospital, Erin has a teacher who visits twice a week and she connects virtually with her Grade 9 classmates and friends. She hopes to work in early childhood development some day. She’s decorated doors in the hospital and plays peekaboo with little ones around the unit.
Erin will stay in hospital at Alberta Children’s Hospital in Calgary until she gets the call that a liver is available. Then she and Melanie will have no more than two hours to pack. They’ll be airlifted to Edmonton and an eight-hour surgery will begin.
Melanie is now living in Ronald McDonald House, a short walk from Erin’s hospital bed, where she spends 12 hours a day, keeping Erin company. She’s still working from Calgary – thanks to great Wi-Fi – and chipping away on her EdD in Educational Leadership at Western University. Both are tasks she can control when so much of her life is beyond her influence.
Because of COVID restrictions, husband Cliff can visit Erin in hospital, but their two older daughters – Abbey, a student at Lethbridge College preparing for the pharmacy program at the University of Saskatoon, and Avery, a Grade 11 student at Catholic Central – have to keep their distance.
Managing a family divided has been tough, and there is no end in sight. A donation could happen tomorrow or be months away. And even after the surgery, Erin and Melanie will be living in Edmonton for at least three months of recovery and monitoring.
It will all be worth it, Melanie says. There’s a 90 per cent success rate with liver transplants. And aside from that one missing enzyme, Erin’s liver is perfectly healthy in every way. A successful transplant would be life changing. She’d no longer have to monitor every bite of food she consumes, and she could taste meat or nuts for the first time in her life if she wants.
“We always knew that a transplant was the one thing that could cure the disorder,” Melanie says. “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.”
Melanie has always been a proponent of organ donation. She hopes her family’s experiences might encourage others to consider it. “Make sure you sign your donor card,” she says, “and make sure your loved ones know you value organ donation.”
It’s the ultimate gift and one given at the most difficult time for the people who just lost a loved one. The stories of the donors she saw stick with her – like the little boy whose organs were harvested after a freak farm accident. “We only saw him at the end (of his organs being harvested). We took the drapes off and he had a teddy bear and his blanket tucked in with him. The braveness of the parents to do that; those are the things I can’t get out of my mind.
“I was part of the transplant team more than 20 years ago,” she adds. “How many have they done since then? One of the things the transplant team said to me is ‘This is your first rodeo. It’s not our first rodeo.’ That was probably the best thing they could have said to me. It’s like I have to remind myself to breathe. We can do this. I have to keep reminding myself, it’s going to be OK.”
How to show support to Melanie Hamilton and family
- Take a selfie of yourself – or a Teams or Zoom shot of your team – wearing green for Green Shirt Day, Wednesday, April 7. Submit by the end of day Friday, April 9 and we’ll fill Connections, our employee newsletter, with photos to raise awareness of organ donation and as a message of positivity to Mel.
- Consider a donation to the GoFundMe for the Hamilton family.
- Visit the Alberta Organ and Tissue Donation Registry to register or for more information about organ donation.