Kidney disease treatment leads to a brighter future for 7-year-old Emmett
“It was a helpless and humbling experience to post on Facebook that my kid needed a kidney to stay alive,” remembers Leanne Morton.
Her son Emmett, now 7, had kidney failure and the best chance of success was receiving a kidney from a living donor. One of Leanne’s friends shared her Facebook post and a friend of theirs responded willing to donate.
“Out of the goodness of their heart, an altruistic donor wanted to help my kid,” says Leanne.
Today, the road to recovery for Emmett is clearer. But it wasn’t always that way…not even close.
Emmett spent the first years of his life surviving, not learning and thriving.
Surviving, not thriving
“Emmett spent the first years of his life surviving, not learning and thriving,” says Leanne.
When Emmett was born at Hamilton Health Sciences’ McMaster Children’s Hospital (MCH), he stayed in the neonatal intensive care unit for months.
He experienced breathing issues, needed a feeding tube to eat, suffered from recurring urinary tract infections that turned to blood infections, and required IV antibiotics.
Before he was born, doctors anticipated challenges with his kidneys. They thought he might be born with only one, but he was born with two kidneys, fused together.
At three months old, he was diagnosed with chronic kidney disease and needed to start dialysis. When the kidneys are no longer working properly, a dialysis machine will take over and act as a kidney for the patient in order to remove toxins and extra fluid from the body.
Kidney and nerve complications
Kidney disease wreaked havoc on his bones.
Emmett also had a spinal cord complication that required surgery at eight months old. During the surgery, he went into cardiac arrest and needed to be revived, followed by a stay in the intensive care unit and follow-up care with the cardiac team.
“Kidney disease wreaked havoc on his bones,” says Leanne. “One time he was walking through the living room and fell and broke his arm. He had a lot of bone breaking and cracks.”
Emmett was also diagnosed with Duane syndrome which affects eye movement. He was on the verge of going blind before it was treated.
Four years after starting dialysis, Emmett received a kidney from the donor who volunteered through Facebook. The transplant took place at SickKids Hospital in Toronto, the central hospital for pediatric kidney transplants in Ontario. After surgery, Hamilton-area patients return to MCH for their recovery as part of the collaborative relationship between hospitals.
The new kidney wasn’t working well after his surgery and the family thought they would need to start dialysis again. After figuring out what went wrong, Emmett was brought into surgery to put in a new stent to allow the urine to drain out of his transplanted kidney. “Then everything started working beautifully,” says Leanne.
To say Emmett and his family have gone through a lot is an understatement.
He also needed insulin to treat high blood sugar, calcium infusions, surgery to remove his parathyroid, hernia surgery, feeding tubes, and more throughout his healthcare journey.
“Emmett’s primary issue is his kidney disease which led us to discover other issues about Emmett that required all the expertise available at MCH to provide the best care for him,” says Dr. Steven Arora, pediatric nephrologist at MCH. “Some of these are complications of his kidney disease as he had kidney failure requiring dialysis as an infant. Others are things we identified in his care that needed to be addressed. I think Emmett has probably seen almost every specialist at MCH in his lifetime.”
Stronger than ever after surgery
Emmett has probably seen almost every specialist at MCH in his lifetime.
Emmett’s father Ian says throughout the past four years of hospital living, he has learned parents need to advocate for their child because as a parent, you know them best.
But after all the challenges, the Morton family only has positive things to say about the care at MCH.
“The staff have been very understanding, accommodating and patient with me on the days I have no patience left,” Leanne says. “We’ve been on almost every ward and each one has such a caring and loving support system within it. We’ve learned how awesome the Child Life team is at explaining the medical piece to Emmett so he can understand what is going to happen to him as he goes for surgery and he can learn how to process the emotions and be prepared for it. As much as it’s hard for him physically, it’s also difficult emotionally.”
Emmett’s resiliency is something to admire.
“The resilience we have seen with Emmett is not something you see every day. It truly is amazing,” says Arora. “All of the things we ask of Emmett and his family are met with a positive attitude, understanding there will always be challenges, readmissions, and setbacks. And yet, he is stronger every day in his journey with kidney disease. Of course his parents are very invested in his care and that is reflected in his success.”
Arora says Emmett and his family have earned celebrity status with the health-care teams in the hospital. “They are pretty famous on the wards.”
Eating everything in sight
When we think he can’t do something, he’s proven over and over that he can.
Everything has been a lot more normal since the transplant surgery, says Leanne. After the getting his new kidney, Emmett wanted to eat everything in sight. “That’s a good problem,” she says. Now he relies on his feeding tube just for water.
Emmett visits the hospital every few months now instead of almost daily. “Being home as a family has been so nice compared to the chaos of driving back and forth every day to be together,” says Ian.
Emmett is waiting for tubes to be put in his ears this month so he can hear better.
His kidney function is very stable, but he will likely need another transplanted kidney in the future. Transplanted kidneys have a limited lifespan. On average, patients like Emmett will need three or four kidney transplants over their lifetime, says Arora.
School is a challenge so his family and teachers are working with him to help close his learning gap now that he has the energy to focus on school subjects.
“Emmett showed us that he always lives by his own rules,” says Leanne. “When we think he can’t do something, he’s proven over and over that he can.”