PORT HARDY—Being listed tops in your field is a good thing for musicians, athletes, and academics.
For 11-year-old Port Hardy youth Miguel Catarata, not so much.
Miguel’s claim to “fame” since his infancy has been his identification as one of B.C. sickest children. He has undergone more than 300 surgeries or medical procedures in his short life to combat the effects of tracheal stenosis, and has both schooled at and become one of the most recognized faces in BC Children’s Hospital in Vancouver.
Twice, Port Hardy residents and others on the North Island have hosted benefits to raise funds for Miguel and his parents, Glen and Sally Catarata, so that he might continue life-saving treatments while maintaining as normal a life as possible.
Last month, he achieved positive milestones with the removal of a pair of implanted devices and the news that his surgery schedule to clear his narrowing airway, once measured in weeks, can now be extended to once every six months.
But a dark cloud looms over this silver lining.
“Everyone says, ‘Oh, now he’s fixed,’” Sally Catarata said. “Well, he’s not. With him approaching puberty, the question is whether the stents supporting his airway will stretch into an adult-sized airway.
“Right now, I’m told his airways will not make it into adulthood.”
Miguel’s rare condition resulted, in part, from an equally rare congenital heart defect known as a pulmonary artery sling, in which the aortic artery essential wraps itself around the trachea and/or bronchial tubes in fetal development.
There are two typical versions of this sling, one of which can be corrected with a simple repositioning of the artery. Miguel had the other version, described in the medical literature as “often fatal”, and requiring a reconstruction of his trachea from just below his vocal chords to the entrance to his lung cavity.
This pulmonary sling was not discovered until Miguel was five months old, and he was 18 months by the time he had open-heart surgery to repair the blockage.
The fix, such as it is, has been a series of seven metal stents to hold the airway open. The stents have had to be replaced numerous times as he’s grown, and the procedure that now is described as a positive because he needs it “only” twice a year.
Still, an abnormal life is becoming as normal as possible for a youngster who lived in and out of hospital until grade 3. Miguel is living at home, attending classes at Eagle View Elementary School and participating in as many activities as he can with his peers. Next year, when he’s old enough, he hopes to join the Junior Canadian Rangers
Best of all, he had his G-Tube, a feeding “button” and a vascular access device (VAD, for the insertion of an IV line in his chest), recently removed.
“There’s no going back,” Sally said. “Now he’s got to take his medicine like everyone else — through his mouth.”
He’s also taking in more food than ever through his mouth after getting much of his nutrition through the feeding button.
“He’s come a long way with his eating,” Sally said. “They never thought he’d eat normally, but he’s got a fairly normal diet now.”
Last month, Miguel was named an honorary officer for a day with Vancouver Police Department and given the full tour, from helping train a puppy in the VPD dog training facility, to trying on full body armour and sighting weapons while touring the armoured response vehicle, to touring the harbour in a police boat.
At the end of his day, the policemen took down the boat’s maple leaf flag and presented it to Miguel, who was born on Canada Day.
The experience moved Sally to want to update the condition of the young boy who has benefitted from the North Island’s generosity.
“Because the community has been so great, and they’ve done two major fund-raisers for us, we’re just thankful for everybody helping us out,” she said. “They’re always asking us how he’s doing. Well, he’s not out of the woods, but he’s very well today.”
Best of all, new medical developments offer hope in the coming years, which could prove to be a new challenge to the youngster formerly listed among B.C.’s sickest.
In the summer of 2010, in a pioneering treatment at a Great Britain hospital, an 11-year-old boy successfully received a transplanted trachea, which had been injected with stem cells harvested from his own bone marrow in an effort to prevent his own immune system from rejecting the transplant.
“This is technology that didn’t exist when Miguel was young,” Sally said. “It gives us a ray of hope, because it’s not ‘Now what do we do?’ That was nice news.”