Usually, a mother catching her toddler jumping up and down on the couch would be followed by stern words and an order to calm down.
For Tina Mitchell, however, seeing her then-four-year-old son Nathan bounce up and down on the sofa brought tears to her eyes.
“I saw that, and it just melted my heart with joy,” she recalls. “To see him be able to do that, or go outside and get dirty, or learn to ride his bike – things that kids do – it was a huge change. A blessing.”
Nathan is now nine years old, and life for both him and his family – he is an only child to Tina and her husband, Jason – is good.
It wasn’t always that way.
Just before he turned three, Nathan was diagnosed with nephrotic syndrome – a condition in which damaged kidneys leak abnormal amounts of protein into the urine, causing painful swelling.
Signs of the problem actually began showing when he was just 18 months old.
Nathan’s growth was slow, and he would wake up with swollen, puffy eyes. At first, doctors didn’t think it was anything serious, and suggested the puffy eyes could be an allergic reaction.
“We went through a period where we eliminated certain foods, trying to find out what is was,” Tina explains. “But nothing worked. It turns out it was fluid that was causing the puffiness.”
After being referred to BC Children’s Hospital’s nephrology department, doctors discovered Nathan had a rare condition called focal segmental glomerulosclerosis (FSGS), a disease that attacks the kidneys.
That year – until Nathan was four – was a rough one, she admits.
With FSGS, one of the proteins the kidneys aren’t able to retain in the blood is albumin, which instead “leaks” throughout the body and is what causes swelling.
Nathan was “in the hospital more than he was at home” and when he was home, the disease had zapped him of nearly all his energy and appetite.
He underwent a number of surgeries, including one to insert a vascular-access device, so he could receive IV treatments.
“It goes right in your chest – right here,” says Nathan, tapping his chest. “The IV treatments added albumin back into my body, so the fluids would go where they’re supposed to go.”
Nathan, his mom points out, knows nearly all there is to know about his condition. And for someone so young, he has no trouble rattling off the multi-syllabic medical terms or medications.
When he was in the hospital, he also learned how all the machines worked – at one point even correctly directing a young nurse to push a particular button on a machine that was beeping incessantly.
Between the ages of three and four, Nathan spent much of his time in and out of BC Children’s Hospital, as doctors tried to find – but with little success – a solution to the South Surrey youngster’s increasingly painful problem.
In some cases, FSGS is treatable with medication, but Tina notes “the medications only made things worse.”
It was immeasurably difficult for Nathan’s parents to see their only child in so much pain and discomfort. As the toxins built up in his body, he felt nauseated, had no energy and, eventually, stopped eating.
“All he could do some days was lie on the couch in pain. That was pretty hard. And I couldn’t always just sit there and hold him, either, because I had to get his medications, I had to do his tube feedings, then clean up from that,” Tina explains.
“And in between, I was on the phone with the hospital a lot, asking questions, asking if I should bring him in.”
“My mom could have really used an earpiece, or a (phone) headset,” interjects Nathan, with a laugh.
After further tests, doctors determined Nathan’s FSGS was caused by genetics, which his mother notes is uncommon.
“He has the rarest form of a very rare condition, and unfortunately, the genetic form is the one that isn’t treatable with medications,” she explains.
The only solution was a kidney transplant. But because it’s a genetic condition, both Tina and Jason were not suitable transplant matches.
Tina’s mother, Carol Fleming, was a match, however.
“It wasn’t a hard decision to make, that’s for sure. When they told me I was a match, I was just so relieved and so excited,” Carol, a Vancouver Island resident, tells Peace Arch News in a phone interview.
“It was just so difficult to see him like that. It brings tears to my eyes thinking about seeing him there, all swollen and sick.”
In most kidney-transplant operations, the old kidneys of the recipient are left inside the body, and eventually just shrivel up and remain non-functioning. But with Nathan, both had to be removed to make way for his donor kidney – which meant two major surgeries, back-to-back.
First, he underwent a double nephrectomy, and was hooked up to a dialysis machine until Fleming’s kidney – which was removed at St. Paul’s Hospital – could be brought to BC Children’s. Then, later in the day, Nathan received his new kidney.
“That was a really long day, and pretty scary. But really exciting and joyful, too,” Tina says.
“It was a corner to turn, and a chance at a new life… we were so lucky that my mom was able to donate a kidney.”
Though there was the requisite amount of recovery time, Tina noticed a change in Nathan almost immediately.
“Kids bounce back so quickly. And as soon as he could do stuff, he was doing stuff.”
In the months and years that followed, little things that some parents might take for granted became incredible moments.
Tina remembers, specifically, the joy she felt watching him ride his bike outside their home.
“When he was younger, we had a little tricycle for him, but he would just sit on it and we’d push him, because he didn’t have the energy to do it himself. This was such a change.”
Nathan’s transplant is not a cure for his kidney disease, and the immunosuppressant medications he still takes – in order to keep his immune system from attacking his new kidney – have left him vulnerable to germs. In order to steer clear of anything that could cause him to get sick, he is now home-schooled. And he still goes to BC Children’s Hospital for monthly blood work and other tests.
There have been occasional complications, but Nathan has overcome them all.
And Tina notes it’s left the Mitchells extremely grateful to the staff at the hospital.
“There’s a whole team there – an amazing team. The change in Nathan’s quality of life is amazing. It’s really like a miracle… and without the treatments and support we received, Nathan would not be here today.”
It is because of that help that the Mitchells are trying to drum up support for the hospital foundation’s annual Jeans Day initiative next month.
Jeans Day – which is April 30 – offers schools and businesses that normally have a formal dress code the chance to let employees or students wear jeans, in exchange for purchasing a button or pin to wear.
For more, visit www.bcchf.ca/events/event-calendar/jeans-day