A Maymont-area family is waiting for a phone call that could turn their lives upside down.
Dane and Jennifer Starycki’s 11-year-old son Nate was born with gastroschisis. His stomach wall didn’t close in utero and part of the intestines grew on the outside of the abdomen wall.
“Usually it’s not that complicated but he has been worst case scenario” for a number of complications, Jennifer Starycki said.
Nate has had four open abdominal surgeries plus a number of other surgeries.
Life has been in and out of the hospital, including the Royal University Hospital in Saskatoon for the first 13 months of his life, followed by the Alberta Children’s Hospital for months at a time.
Starycki said Nate’s case has been deemed too complicated and the family must go to Toronto Sick Kids, where Nate had been in 2014.
Now he’s waiting for organ transplants.
His intestines don’t allow him to absorb and digest as many calories as he needs, and there is a risk of starving to death. Nate eats to keep content and feel full, but absorbs a minimal amount of calories.
Nate lives on TPN, total parenteral nutrition, which Starycki said is like IV nutrition. One receives TPN through a central line in a main vein. Nate must be on TPN five nights a week. TPN can be detrimental to the liver.
Because of complications involving blood clotting, Starycki said, only one vein is usable as the central line.
Other complications can arise from the line becoming infected, and Nate suffered three line infections last year.
The family was told last year Nate’s only chance is a transplant.
Nate’s parents have decided to put him on the list for intestinal and liver transplants. He could potentially receive a stomach transplant.
After the transplants, the family would have to wait and see if Nate’s body would reject the organs.
The family deciding on transplants, as Starycki put it, is like handing in one problem for another.
“You’re not doing it to get something better, it’s because you have no other options left except for perishing,” Starycki said.
The other option is letting him starve to death and the family would “have to sit and watch that.”
An intestinal transplant, Starycki said, is different than transplanting a heart or liver because intestines have something of their own brain. A risk of the transplants is the body rejecting the new intestine or the intestine rejecting the body, a situation she describes as a two-sided fight.
“I don’t want to say it’s experimental right now, but there’s very few that have been done,” she said.
The situation, to Starycki, is “a race against time,” in which Nate’s line either quits or he gets a transplant.
The match for an intestinal transplant also has to be “a sizeable match,” Starycki said. In Canada, child mortality rates are lower compared to the United States, so “options are that much smaller,” she said.
Starycki said Nate was evaluated on a scale system, in which one means a person doesn’t need a transplant, and 40 means a person is in the hospital admitted and awaiting a transplant.
For a month, Nate was evaluated at 30. He was later evaluated at 38.
“So he’s pretty much as high as he can be without being admitted,” Starycki said.
In her spare time, Starycki organizes fundraisers, including a recent one for the Ronald McDonald House, as the family has stayed there numerous times. They realized Nate’s name was in the word “donate,” and made stickers and apparel, which they sold.
Starycki said her son loves seeing people wearing the clothes around Maymont. Some items have gone to Ontario and British Columbia.
Starycki said the fundraising is a way to keep busy and to give back to charities that have helped over the years.
“Having a chronically ill kid doesn’t make it easy to work,” Starycki said, and life can be a constant back and forth among hospitals.
“All we can do is hurry up and wait, as they say,” Starycki said, and to “try to live life the way you’re supposed to.”
She said, as a parent, watching her son endure is difficult, but ultimately it could save his life.
Dealing with such matters, Starycki said, is “not what you think of when you decide to start a family.”
She thanked the community for their support, and has found the amount of people praying and checking in to be “beyond overwhelming.”