EDMONTON – A one-year-old boy is at the centre of a medical mystery at the Stollery Children’s Hospital where doctors say the child’s only hope may be a transfer to a hospital in the United States.
Originally from Hay River in the Northwest Territories, Deagan Clavette’s health issues began at birth.
According to his mother, Jennifer Tregidgo-Clavette Deagan stopped breathing and had to be taken to hospital when he was just five days old.
At six weeks old, he went into respiratory distress and was airlifted to Edmonton while at seven months of age, he went into anaphylaxis and doctors had to perform an emergency tracheotomy. Deagan still breathes through a tracheotomy tube.
The boy has been in the Stollery Children’s Hospital ever since but his condition has yet to be diagnosed.
Dr. Isabelle Chapados, a pediatrician, said doctors have run countless tests and held multiple consultations but they are baffled by Deagan’s problems.
Chapados said there have been meetings with pulmonologists, allergists, gastroenterologists, pathologist and hematologists within the hospital and across Canada for the last year-and-a-half, but no one has ever seen a case like Deagan’s.
“As doctors we never like not to know but sometimes we do not know and it stays like that,” she said.
“We have been looking at very rare diseases now since we have no obvious explanations.”
The lack of answers is tough on the boy’s family.
“I wish we could diagnose him. He’s so complex and he’s so unpredictable. I feel bad for Deagan. This is his life,” Jennifer said.
Chapados said Deagan presents with what appear to be allergic reactions but they cannot be characterized as that medically.
“He has reactions that are completely unpredictable to different agents and that do not fit the bill of allergic reactions. That makes his life very unpredictable because we never know what will cause it,” Chapados said.
Jennifer describes his reactions as “unbelievably scary”.
“Sometimes he can go sit in a chair and he’ll just faint. He’ll go out and break out in hives. Other times he vomits. Other time he has upper airway swelling and his breathing is compromised. Many times we have to give him epinephrine to save his life,” she said.
Jennifer said Deagan’s mystery medical condition is taking a toll on her son’s quality of life. He is only able to eat a hospital formula and feeds through a tube in his stomach.
“He’s allergic to life,” she said.
Chapados said that, at this point, there is nothing further that doctors can do.
“For this family, for their quality of life, for the sake of knowing so we can know how to intervene better, he needs to be seen in the United States,” she said.
“We’re at the end of what we can offer. It’s not a life for a child.”
Jennifer said that if the status quo continues with her son, she does not think he will survive.
The family is waiting to hear back about whether Deagan has been accepted into the National Institutes of Health in Maryland. Until then, Jennifer said the family is holding out hope for her son.
“Deagan is a fighter. He always has been and always will be. You have to be a fighter to maintain this life.”
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