Montreal family searches for live donor for their toddler with rare kidney disease
Carmella was diagnosed with congenital nephrotic syndrome as a newborn
A family from Montreal's West Island is sharing the story of their toddler's illness to raise awareness about kidney diseases and the importance of organ donation in saving lives.
CBC agreed to not give the family's last name because they're receiving unsolicited messages online.
By all accounts, Carmella is a happy, radiant, almost two-year old, despite the daily challenges that come with living with a severe and chronic kidney condition.
She was diagnosed with congenital nephrotic syndrome as a newborn, after being rushed to the ER of the Montreal Children's Hospital.
Dr. Indra Gupta, a pediatric nephrologist and Carmella's doctor, said it's a very rare kidney defect that allows proteins to flow through the kidneys and be lost in the urine.
"We need protein to grow, we need protein in our muscles, we need protein to fight infection," Gupta said. "These are all basic bodily functions that are a huge challenge for Carmella, for her to succeed in."
As a result, she remains small for her age, and isn't able to walk yet.
Carmella's father, Justin, said the diagnosis first came as a shock.
"It was hard to digest," he said, explaining that, at the time, the family wasn't sure of the severity of the disease nor the outcome.
"Everybody has this dream where you come home from the hospital with your newborn and everything is like a fairytale and wonderful and that's not the case for everybody," he said.
The first months of Carmella's life were marked by long hospital stays, surgeries, and complications.
"One of the biggest takeaways that we got from this experience is you really need to seize the day, you really need to live every day and try to make the best of it," Justin said.
He believes adopting a positive outlook has helped carry the family this far into Carmella's journey.
Now, as the search for a live donor begins, Justin hopes the family finds the right match so his daughter can have a more normal childhood.
Becoming an organ donor
"Carmella is one of the many children we have who is in dire need of finding a new kidney," Gupta said, adding it isn't easy to find donors.
When it comes to kidney transplants, donations can be from living donors or those who are deceased. In both cases, there is screening to ensure compatibility in blood type and antibodies, explained the doctor.
Gupta said the advantage of receiving a kidney from a living person is that the projected lifespan of the transplanted kidney is longer than that of a deceased person.
In the case of a deceased donor, the kidney can last 10 to 15 years compared to 15 to 20 years for a living donor.
To become a donor after death, Quebecers can just sign the back of their medicare card or let their family know their wishes.
According to Gupta, the process is more complicated for living donors, who have to test for compatibility and undergo an "evaluation from head-to-toe to make sure we're not creating, if you will, a second patient."
"You can live with one single kidney as long as that kidney is in top shape," she said.
You should also expect a recovery period of about six weeks.
Most often, Gupta said, living donors are family members or close friends, but they can also be altruistic donors.
Parents often want to give, but aren't necessarily a match and they're also already doing a lot, pointed out Gupta.
In Carmella's case, even with a team of dedicated medical specialists at the hospital, it falls on her parents to deliver all the medical care at home.
"It's a full-time job giving her care, trying to maintain her in optimal health," Gupta said, adding that responsibilities like that often come with hidden economic costs for families.
Gupta said those who have chosen to be living donors say it's the most rewarding thing they have ever done, but she warned it isn't for everyone and no one should feel guilty or compelled to be a donor.
"You need to feel in your heart of hearts this is the right decision for you," she said.
The family has started a Facebook group called Carmella's Kidney Champions to help in their search, but also to encourage organ donation.
"If somebody listens to this, signs their medicare card, and helps somebody years from now, that's a huge impact for us," Justin said.
Those seeking more information can contact the MUHC Nephrology Clinic at 514-843-2240, option 7.
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With files from Gabriel Guindi