It’s a pretty exciting time in Corey and Crystal Ogden’s Charlottetown household as the countdown to Christmas ramps up.
© GUARDIAN PHOTO BY MARY MACKAY
Corey and Crystal Ogden of Charlottetown are rejoicing in the fact that their daughter Cadence has a new liver after a successful mother to daughter transplant in late September.
The tree is in its showcase place, the presents are almost all wrapped and their six-year-old daughter, Cadence, is eagerly planning what snacks she’s going to leave for Santa and his trusty red-nosed sleigh guide, Rudolph, on Christmas Eve.
This picture perfect Christmas is all the more special because, not long ago, it was touch and go whether Cadence was going to survive the week, let alone make it to Christmas.
But, thanks to a mother-to-daughter liver transplant on Sept. 23, she’s a vibrant and very vocal six-year-old in the throes of Christmas anticipation.
“I said I already got my gifts this year already: Cadence has a brand new liver and Crystal is healthy. What else can you ask for? We’re pretty blessed,” says Corey, who flashes his wife a warm smile as he balances his chatty daughter on his knee.
Unbeknownst to everyone, Cadence was born with Alpha 1 Anti Trypsin deficiency, which is a hereditary disease of the liver that causes enzymes in the liver to stay where they die and in turn damage and eventually kill the organ.
This condition went undetected till Cadence was two at which time her pediatrician discovered a mass in her stomach and immediately referred her to the IWK’s oncology unit in Halifax, N.S.
“They did test it and realized that it wasn’t a tumor, it was that her liver and her spleen were enlarged, but they didn’t know why. . . ,” Corey remembers.
A battery of tests resulted in the diagnosis of Alpha 1 Anti Trypsin deficiency.
“We didn’t really know (what to expect) because it was very rare,” Crystal says.
Other than routine blood work and high doses of vitamins because her body wouldn’t absorb the nutrients properly, things went along smoothly health-wise for Cadence until recently.
Trouble really started brewing in June of this year when she started having trouble with low vitamin K levels, which helps the blood clot, and low albumin levels, which keeps fluid in the veins.
“If you are low on albumin the fluid gets released through your body. She gained about 12 pounds of fluid just in her stomach within a matter of two weeks,” Corey says.
She was started on transfusions of albumin at the Queen Elizabeth Hospital (QEH) in Charlottetown, which helped to reduce the swelling.
“They’d started giving her vitamin K transfusions (a year before that) so she’d get high doses of vitamin K in her body so her blood would clot. They were afraid that it wouldn’t clot because she started getting nosebleeds and if she had a cut on her finger it would bleed for 20 minutes,” Corey remembers.
“They knew it was getting worse. It got to the point that they thought the next step would be to go to Sick Kids (Hospital in Toronto) to meet with the transplant team because we’ve all known that it was pretty much inevitable that she would need a transplant. We knew that day was coming.”
The Ogdens travelled to Toronto in July to complete the preliminary steps to be put on the transplant list.
By August Cadence was in the QEH almost as much as she was out.
After a serious health incident on Sept. 12, Corey received a call from a Sick Kids Hospital transplant nurse saying they had to come ASAP.
“I picked up Crystal, sat her down and said, ‘I’ve got good news and I’ve got bad news. The good news is that Cadence is going to get her liver fairly soon, the bad news is we need to go in two days. . . ,’” Corey remembers.
The next stage was determining if the liver was going to come from a live or deceased donor.
“They really stress nowadays to try to get live donors because the waiting list (for deceased donors is so long). If you have a live donor — for example, my wife or myself — as long as you meet the qualifications they can book the appointment whenever you want. So you don’t have to wait,” Corey says.
“If it’s a deceased donor you have to make sure the liver is a certain size, if it’s a child it really should be from an adult with a good liver or a child the same size, so there are a lot discrepancies that way.”
The couple both filled out paperwork to be a live donor. Crystal was the better match.
“My first thought was whatever I have to do for my child I’m going to do it. . . ,” she says, tears welling at the memory.
“It’s just something that you just don’t think twice about, you just do it.”
Cadence’s blood clotting level was dropping to the point where surgery was going to become impossible so surgery was set for Sept 23.
At 8 a.m. on Sept. 23 transplant specialists at Toronto General removed 35 per cent of Crystal’s liver and then walked it across the street to Sick Kids Hospital where Cadence’s surgeons were waiting.
Crystal was in surgery for more than six hours and Cadence was in for more than 12.
“I remember waking up to excruciating pain — pain I’ve never felt before. I remember being up all night using the (morphine) pump every 10 minutes. I just had enough energy to use the pump,” Crystal says.
Cadence was in a lot of pain as well but by the next night she was attempting to get out of bed.
“They actually had to restrain her . . . because the nurse was so afraid she was going to blow her stitches. She couldn’t believe as a five year old how strong she was. That just goes to show how resilient she is because anybody that knows her knows she’s a fighter,” Corey says.
After six days in the hospital Crystal returned to Ronald McDonald House where they were staying to continue the long recovery process.
“They said after the first month (my liver) would probably be 99 per cent regenerated but you lose 35 per cent of the function but it’s not enough to notice,” she says.
Cadence was discharged after 17 days and, although the family is now home, she is still on a slew of medications and is continuously being monitored.
She will have to be on antirejection medication indefinitely. She will always have to be checked by a doctor even after she becomes an adult.
“She definitely has more energy. The swelling in her belly has gone down, the yellow (tinge in her skin) has gone away. The spider veins are at a minimum now. She’s just a lot better. The energy is the biggest factor,” Corey says.
With Christmas coming, there’s energy to spare for this excited six-year-old, who is now officially cured from her liver disease, thanks to the transplant.
“The big thing for transplant patients is the first year is the most crucial year. Once you get over the first year you’re pretty good. The first year there are always ups and downs. She gets blood work done very week and they’re always checking all her different levels,” Corey says.
“Things can always be worse. We’re very lucky.”