COOS COUNTY — A 7-week-old infant is undergoing a bone marrow transplant to save his life.
The bone marrow donor is his 4-year-old sister.
“Colton was born July 24 after a healthy, normal pregnancy and there were no complications during delivery,” said his mother Kayla Land. “Then a week later we got a phone call from his pediatrician that his newborn screening had abnormalities and needed us to come in right away for labs to rule out what they hoped was a false positive.”
Kayla and Daniel Land stand with their three children, Krissy, 8, Khloe, 4, and Colton, 7 weeks old.
But it wasn’t a false positive.
At 2 weeks old, Colton Land was diagnosed with a rare disease known as severe combined immunodeficiency. This means he was born with no immune system and if he contracts the common cold or a virus, he would die because he has no cells to fight off an infection.
“Mostly patients need to be treated within the first three to six months to have a good chance at surviving,” Land said, recalling the rush after diagnosis of traveling to Oregon Health and Science University’s Doernbecher Children’s Hospital in Portland.
Genetic testing was done to pinpoint how Colton got the disease, where it was learned that both Kayla and her husband, Daniel, were carriers.
“We each have a bad chromosome and passed it to him,” Land said. “We already have two healthy girls and this is mostly passed down to males. We finally got our boy and it got passed down to him.”
The disease, SCID, is so rare that Doernbecher’s only sees about one to two cases a year. Land was told by doctors that it is now believed that some sudden infant death syndrome cases may have been from SCID.
“Oregon just started doing this testing in the newborn screenings a couple years ago, so some babies that died for no known reason could have been from this,” Land said. “We have a great physician who told us that it is rare enough that there is countrywide research being done to look at different treatment options. We have agreed for them to use Colton to look at what else they can do.”
The known treatment option for babies with SCID is to undergo a bone marrow transplant. Many SCID infants are placed on a transplant list to find a match. Siblings have a 25-percent chance of being a match and so Land had both of her daughters tested.
“Our 4-year-old was a perfect match,” she said. “Thankfully he doesn’t have to go through conditioning with chemotherapy before this transplant occurs. She is going to save her little brother’s life.”
As Land explained it, 4-year-old Khloe’s healthy cells that make up her immunity will take over Colton’s bad cells that aren’t working.
“He will forever have her cells fighting infections for him,” Land said. “It will be a slow progression because there won’t be conditioning beforehand, so it could take a year before he is out in the world living a normal life as a kid.”
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Not just that, but after next week’s transplant, Land and Colton will need to stay in Portland for three months while her husband continues working. He and their two other children will only be able to visit on the weekends.
Khloe and Krissy hold their seven-week-old brother, Colton, who was diagnosed with a rare disease.
Because Colton has no immune system right now and won’t have a strong one for possibly a year, the family is in isolation and has been since his diagnosis when he was 9 days old.
“Our girls haven’t been able to play with their friends or start school this year,” Land said. “We can’t take him to restaurants.”
Both Khloe and 8-year-old Krissy won’t be attending public school this year, but starting home school. In addition, because Land is Colton’s main caregiver, she has had to leave her job at Bay Area Hospital where she worked as the executive assistant to the Human Resources Department.
“I have to be home with him for up to a year until his numbers are better,” she said. “My maternity leave and PTO runs out this month and we are missing my income for the next 11 months, which was the majority of our income.”
To help the family, Bay Area Hospital is coordinating a community fundraiser Sept. 27, 28 and 29 at Mingus Park. A group of BAH employees is trying to bring together eight teams for a co-ed softball tournament and other games with $200 buy-in to play per team.
There will also be “Team Colton” bracelets for sale.
To sign up or for more information, call 541-260-3185.
Bay Area Hospital employees are also trying to get 60 people to commit $50 a month to the Land family to cover her missing income during the year while she is out. Those commitments begin this month and employees putting this on are using Venmo, which allows people to send it straight to the Land’s bank account.
To sign up, call either 541-269-8066 or 541-269-8510.
A GoFundMe has also been set up to help with medical costs and to supplement income while Land is taking care of Colton for the next year. To donate, visit www.gofundme.com/f/support-colton-lands-scid-journey.
“I just want people to be aware because this disease is scary,” Land said. “There is no cure. Colton will always have this disease and be dependent on his sister for her cells. They say 90 percent of babies can have a normal life at a year old minus medications and infusions that he will be on for a while, but he will eventually be able to be around people and play in the dirt.”
She has discovered that this has been a learning experience for the community as well, especially for the family's pediatrician.
“They said they had never seen SCID before, it was new for them,” Land said. “OHSU is working on community education for local pediatricians for people to be aware of this disease, one that is very hard because when we are just in an elevator headed to a doctor’s appointment people want to see the new baby but if someone breathes on him it could kill him. He looks perfectly healthy. No one would ever know something is wrong.”