MARYSVILLE — Spencer Norton isn’t even a year old yet, and he’s already been fighting for his life.
The infant was born to Amy and Scott Norton of Marysville on Nov. 8 of last year, and while other local families were celebrating the Seahawks heading to the Super Bowl, Spencer was heading to Seattle Children’s Hospital due to a trio of undiagnosed congenital heart defects — transposition of the two great arteries of the heart, coarctation of the aorta and ventricle septal defect — that are referred to as Tausig–Bing syndrome in the extremely rare instances when all three occur together.
“Because his two great arteries were transposed, they were pumping un-oxygenated blood into his body,” Amy Norton said. “The only reason he survived was because he also had that ventricle septal defect, which was basically a large hole next to his aorta, that allowed his oxygenated and un-oxygenated blood to mix.”
The Nortons had taken all the prescribed steps for carrying, delivering and caring for Spencer, who appeared perfectly healthy and displayed normal growth patterns for the first couple of months of his life. Although Spencer began experiencing some congestion, it seemed to Amy and Scott as though he’d simply come down with a common cold, and after following a few recommended home remedies, they took him to the family doctor who told the family that Spencer’s condition was normal and probably just a viral infection.
On the Sunday of the Seahawks’ play-off game, a family friend who was celebrating with the Nortons noticed that Spencer’s face had an ash-blue color. Although this quickly dissipated, the next morning, Amy picked Spencer up from his bed and noticed that he had a purple ring lining his lips, and that his nail beds were purple in color.
“I started making calls to local clinics, describing his symptoms, and when I spoke with Seattle Children’s they told me to call 911,” Amy Norton said. “Spencer was only getting something like 70 percent of his oxygen.”
Spencer’s surgery was delayed by him actually contracting a common cold, which dropped his oxygen levels down to as low as 10 percent to 30 percent.
“They had to put him in an artificial lung machine,” said Amy Norton, who camped out with Scott and their daughter Olivia in the Ronald McDonald House in Seattle to be close to Spencer, who spent 20 days in the Cardiac Intensive Care Unit of Seattle Children’s Hospital. “Olivia held his baby brother for the first time just a few days ago, and said, ‘We’re an adventure team.’”
Even after his surgery, Spencer remains at the hospital, and is facing many more gauntlets of medical care to come.
“We have to wean him off morphine and other drugs, at the same time that he has to keep taking medicine because he had too much blood-flow into his lungs, which was making them tight,” Amy Norton said. “He could have lifelong pulmonary hypertension. He has a Gore-Tex patch on the hole in his heart, and his arteries have been rerouted, but doing that can cause kinks, which might eventually stop his oxygen flow altogether and lead to a heart attack.”
According to Amy, Spencer’s surgeons rated the difficulty of his operation as an 8 out of 10. In spite of spending most of his third and fourth months of life hooked up to lifesaving machines, and receiving doses of various medications, he’s remained an upbeat infant.
“Spencer has shown us how strong he is,” Amy Norton said. “He is the happiest little baby I’ve ever known. He still smiles in circumstances when most adults wouldn’t even want to open their eyes.”
While Amy considers Spencer himself to be the greatest gift that she and Scott could have received, she did not discount the many generous gifts that her family has received from the surrounding community.
“We have been so humbled by all of the people we don’t even know, who have given us food and donated money,” said Amy, who works as a teacher at the Marysville School District, while Scott works for King County Metro. “It’s been a phenomenal experience. We don’t even have a clue what all of this will cost yet. We’re not even in a place where we can do that math. We’re just trying to get Spencer home.”
You can help cover the Nortons’ out-of-pocket expenses by donating at www.giveforward.com under “Spencer Norton’s Fundraiser.”