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ZACCARI’S PROGRESS

Despite odds seemingly stacked against him, young Zaccari Reid thrives thanks to exceptional medical care and the gift of a new kidney.

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A mere nine weeks after his early and already medically precarious arrival into the world, baby Zaccari Reid's health issues were worsening. He had already spent the first three weeks of his life in NICU where doctors discovered he had pulmonary valve stenosis, a congenital defect that causes the pulmonary valve to narrow and slow the blood flow.

Treatment is generally highly successful, with a good prognosis for leading a normal life. That was what Ashley Barnaby, Zaccari's mother and sole care provider, was expecting as she prepared for Zaccari's minor surgery.

The first six weeks after his discharge from the NICU seemed quite normal until the day Zaccari began exhibiting slightly strange behaviour. To the casual observer, it could easily have been overlooked but it would never escape the keen instinct of a mother.

"The look that he gave me-it looked as though he was looking at me but almost through me, like he couldn't see me," said Ashley, who immediately suspected Zaccari was experiencing a seizure.

Her online research seemed to confirm it and when Zaccari began vomiting violently and his eyes and legs twitched, Ashley rushed Zac to Horizon's The Moncton Hospital.

It was then that blood tests established he was losing large amounts of protein, usually pointing toward a kidney issue. Dr. Blaney, his neonatal doctor, scheduled Zaccari to see a nephrologist at the IWK Health Centre (IWK) in Halifax, Nova Scotia. Ashley expected to spend a couple of days there for some albumen infusions for Zac before she could return to Moncton with her little boy and start living the normal life she'd so desperately hoped for.

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LONG DAYS AND NIGHTS AT THE IWK

But two days turned into three months and the hoped-for normal life was not yet to be. After 12 weeks at the IWK, Ashley and Zaccari could return home where Zac would spend another six months of overnight stays at The Moncton Hospital for daily albumen infusions.

"I would go in the morning, pick him up, bring him home, do all of his care at home and then at night I'd have to take him back because he needed so many infusions throughout the day," said Ashley.

Zaccari's all-night admissions over the period helped Ashley realize how genuinely caring and "absolutely amazing" the staff is at The Moncton Hospital. Kelly Evers, then a pediatric night nurse, had taken a particular shine to young Zaccari, assigning herself to his care whenever she worked.

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A NEW FRIEND AT THE MONCTON HOSPITAL

Ashley remembers taking Zaccari to the hospital one night and being met with a compassionate smile and a warm handshake from one of his caregivers there: "I'm Kelly, I work nights. I absolutely love your son. If I'm on nights, I'm with him!"

Ashley took comfort in knowing when she couldn't be there with her son, Kelly was there with him, knowing he was in "amazing hands."

Kelly, a pediatric nurse for 18 years at the time, recalls Zaccari as a special little boy who immediately stole her heart.

"There are a lot of kids that come and go and take a piece of your heart but there was just something special about him," she said. "From the very beginning there was just something about him that made me fall in love with him."

She remembers Zaccari as being a bit mischievous. Every night she would give Zac his medications and he would pretend he was going to sleep.

"You'd go in a little later and he'd be in there laughing or playing in his crib," Kelly recalled. "He always had that bit of a routine he would try and pull."

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ZACCARI'S KIDNEYS FAIL

Kelly fondly remembers those playful moments but knew a time would come when a more permanent medical intervention would be needed for the playful little boy who had stolen her heart.

Eventually, Zaccari's health further deteriorated and he experienced complete kidney failure, requiring dialysis. This meant another stay at the IWK and training for the weary mom on performing peritoneal dialysis on Zaccari at home. Peritoneal dialysis is a treatment for kidney failure that uses the lining of the abdomen to filter blood inside the body.

When this method suddenly began to fail, Zaccari had to resort to the more complicated hemodialysis, requiring treatment again at the IWK. For the next two years, three times a week, Ashley and Zaccari made the two-and-a-half hour trip to Halifax in the morning for three hours of dialysis treatment and then drive back home.

"By the time we got back to Moncton, it was usually 5 or 6 o'clock," Said Ashley. "I would get supper made quickly for my other son and then we'd go to bed and two days later we'd do the same thing."

Ashley remembers those weary times and knew this was not sustainable. Eventually, Zaccari would need a transplant. Ever the caring mom, Ashley offered one of her kidneys.

"I went through three months of testing and then finally when I thought I was meeting with the adult nephrologist to decide on a surgery date, I was denied," she said, calling it a devastating time for her family.

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WAITING FOR THE CALL

Zaccari spent an anxious ten months on the active recipient list. For Ashley, it amounted to ten months of being glued to a cellphone, constantly ensuring it was fully charged, regularly picking up unknown numbers hoping this was the call, only to be let down by the offer of a free cruise by some scammer.

"You're constantly waiting for a phone call," said Ashley. "If the phone rings you kind of hold your breath hoping to hear the doctors on the other end of the line."

At 8:52 PM on February 6, 2018, the call came. The roads were unpredictable, so rather than risk a white-knuckled drive to Moncton, she and Zac were preparing to spend the night at Ronald McDonald House in Halifax. Normally, Zaccari would already have been tucked in for the night but Ashley let him play with Lego blocks in the living room.

"We were building a little house when all of a sudden, my phone rings and when I looked at it, it says 'IWK SWITCHBOARD'," Ashley recalled, knowing there would be no other reason to get a call from the IWK unless they found a kidney for Zaccari.

She nervously answered the call and held her breath, hoping to hear the exciting news from the nephrologist: "We found a kidney for Zaccari." Ashley's heart fluttered as she was hit with the stark realization, "this is happening!"

As exciting as it was to receive the news, Ashley had been cautioned that even after the call, things do not always go according to plan. "

"I'm very happy but also, I'm preparing myself-I'll believe it when it happens," she said.

It did happen-very successfully. Following the three-and-half-hour surgery, Zaccari recovered quickly and spent the next four weeks in isolation to ensure his new kidney was functioning properly.

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FOLLOW-UP AT THE MONCTON HOSPITAL

Once in the clear, it was back home to Moncton for the inseparable pair where Zaccari's began a new routine for bloodwork at The Moncton Hospital several times a week.

Because he's been connected to a feeding tube his whole life, Zaccari works with an Occupational Therapist to help him learn to eat.

With such an extensive medical history packed into his short life, Zaccari has become somewhat of a celebrity at the hospitals where he's spent so much time.

"The Moncton Hospital and the IWK are so much more than just staff to us,' said Ashley. "They're pretty much family."

Never was this truer than at Zaccari's recent one-year celebration of his successful transplant operation Ashley hosted. Kelly Evers, now a nurse in another unit, was there, along with her husband and daughter.

"From the moment I left pediatrics I messaged Ashley and said I'm gone now and so we can actually be friends," said Kelly. "Anytime Zac's been in the hospital and when he had his transplant, we just kept the connection so I could know he was OK."

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BE SOMEONE'S HERO

Ashley and Zaccari were recently invited to Parliament Hill on behalf of Canadian Blood Services for an event commemorating organ donation. At the event, Ashley will be holding a photo of Adam, the man who lost his life and gave hope to another. Her message to Canadians: "Be someone's hero…be an organ donor."

Ashley has plenty to be thankful for in having a wonderful son who continues to thrive despite being dealt unfair odds even before he entered this world.

"If it wasn't for the fast-acting decisions that were made at The Moncton Hospital, even when Zaccari was in-utero, I probably wouldn't have him," said Ashley, recalling her medical care providers warned her she was at a high risk of a stillbirth.

"I owe them a lot," said Ashley. "Their care and their fast decisions are among the reasons I have my son with me today."

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