Issuu

Saturday, June 29, 2019 | Yourr community community newspaper since 1916

DISTANT DOCTORS CITIZEN PHOTO BY BRENT BRAATEN

Karver Fuller, 3, rides a bike at the Child Development Centre.

Big challenges for northern kids needing specialized care Colin SLARK Special to The Citizen

risty and Wes Fuller are sitting in a clinic in Prince George They’re with their son Karver. A nurse comes in to administer Karver his latest scheduled vaccination. The nurse takes a look at Karver’s file and turns to look at the

Fullers. “Are you guys the double-whammy family?” she asks. The Fullers never thought their son’s story would become gossip but a nurse they’d never met before has apparently heard all about the most difficult month of their lives. “Didn’t you guys find out that your son needed open-heart surgery and had Down syndrome in, like, the same day?” The nurse isn’t far off track. On Dec. 8, 2016, Kristy and Wes found out that their then-11-month-old boy had Down syndrome. On Dec. 12, they found out that Karver needed open-heart surgery. On Dec. 14, Karver spent six-and-a-half hours getting a congenital heart defect repaired. Since Prince George lacks specialized pediatric care, the Fullers had to drive their son nine hours to receive treatment in British Columbia’s only pediatric hospital: Vancouver’s B.C. Children’s Hospital. Like all parents in B.C. that don’t live in Metro Vancouver, they had to take time off from work and pay for lodging, transportation and many other costs, while not receiving income. Kristy and Wes spent more than $10,000 to be with Karver during his time in hospital. This is the reality for parents of criticallyill children in Northern B.C.

Today’s Weather Hi +19° Low +9° See page 2 for more details and short-term forecasts

LOCAL HOROSCOPE NEWS OPINION RELIGION TRAVEL SPORTS

Karver’s story

sounding,” Kristy recalled. In late November 2016, Kristy took a Kristy is a gregarious alpha mom who sick Karver to a walk-in clinic. The doctor runs a massage therapy business out of their looked at him and said, “Well, you know, house. Wes is a quiet, reserved helicopter kids with Down syndrome tend to get sick mechanic who is frequently away for weeks more often.” at a time for work, sometimes working on This was news to Kristy. This was the first other continents. time she or Wes had considered that Karver They needed help to get pregnant. Kristy’s might have the condition, but it made a ovaries were fine, but her Fallopian tubes certain sense. There were times where at were twisted and unhealthy. The Fullers the right angle she thought she recognized travelled to Calgary something in Karver’s to receive an in-vitro face, but she couldn’t He always sounded fertilization treatquite place it. This ment. As part of the might have been bepug-like. He always treatment, the viable cause Mosaic Down had really loud embryos received syndrome doesn’t genetic testing for always present itself breathing, kind of wet various conditions. quite as obviously sounding. However, Karver’s in a person’s facial Down syndrome was — Kristy Fuller features. not detected by the On Dec. 8, 2016, a clinic. pediatrician conThis is because Karver has a rare form firmed to the parents that Karver has Down called Mosaic Down syndrome, where not syndrome. Kristy recalls that at that doctor’s every cell has the extra 21st chromosome appointment, the pediatrician listened to that causes the condition. The sampled ma- Karver’s heart and tried to suppress a look terial simply may not have contained Down of concern. syndrome markers. The Fullers were asked to take Karver for Pre-natal ultrasounds back in Prince an electrocardiogram (ECG) at a laboratory George also missed signs of Down synin the same medical building before they drome, including Karver’s heart. Children left. Wes remembered taking the test results with Down syndrome are more prone to back up to the doctor’s office and the doctor congenital heart defects. Karver’s went snatched the paper right out of his hands. undetected until he was 11 months old. At 5 p.m. that night, the family received a Karver was a sickly child. His parents phone call from the pediatrician. He asked covered his carrier to prevent him from if they could make an appointment at B.C. catching any illnesses. Kristy took him to Children’s Hospital in Vancouver on Monthe swimming pool, but his skin turned blue day. The Fullers weren’t given specifics, so unless he was in the hot tub. they assumed that the doctors at the hos“He always sounded pug-like. He always pital just wanted to make sure that Karver had really loud breathing, kind of wet would be well enough to fly to Mexico on a

1-3 2 4 6 7 8 9-11

A&E COMICS CROSSWORD MONEY AT HOME CLASSIFIEDS

12-15 13-15 13 16 17-18 19-22

Everest a mountain of trash TRAVEL 8

www.pgcitizen.ca

two-week post-Christmas vacation they’d booked. Not realizing the severity of the situation, they packed lightly and thought they’d be away from home only briefly. Kristy put her massage therapy business on hold and Wes took leave from his mechanic work. The first obstacle came on the trip south. The winter weather was so rough that it took them 14-and-a-half hours to make what is usually a nine-hour trip. The Fraser Canyon was so bad that officials closed the highway just as the family made it out of the south end. They were able to stay at Ronald McDonald House and Easter Seals House for parts of their stay in Vancouver. Both organizations provide subsidized housing in Vancouver for families of children coming from out of the Lower Mainland area to receive medical treatment. However, while they were staying at Ronald McDonald House, Wes had to rent a hotel room elsewhere because he had a cold, and the institution doesn’t allow guests with communicable illnesses. The next day, the Fullers went to B.C. Children’s Hospital and found out just how bad Karver’s situation was. Karver had a complete atrioventricular septal defect (AVSD). Normally a heart has four chambers. Karver’s heart hadn’t developed properly and only had two chambers. Two days later, Karver went in for surgery. The surgeons had to essentially redesign his heart. Complicating things was that Karver was much older than most children that get surgery for AVSD because the defect was discovered so late. Doctors told his parents the surgery would take four hours. It took six-and-a-half hours. — see COSTS ADD UP, page 2

Newsstand $2.00 incl. tax Home Delivered 95¢/day

58307

00200