Woman takes son's cause to heart
Lydia Gray will never forget Dec. 31, 2008.
No, the Eagle River resident didn’t attend the best New Year’s party of her life or celebrate a special anniversary. That was the day Gray received perhaps the most frightening news an expectant mother can get: doctors had detected a defect — heart disease — in her unborn baby.
Gray said she and her husband, David, were stunned.
“We were in a shocked state of mind,” Gray said. “You’re numb.”
Doctors performed open-heart surgery just 10 days after her baby boy was born. Today, young Qunilan is a normal 2-year-old.
Such delicate work wasn’t possible 40 years ago, Gray said, and more advances are needed. To raise money for pediatric heart research, Gray is participating in the American Heart Association’s Heart Walk on Sept. 17 in Anchorage.
Dr. Scott Wellmann of Alaska Children’s Heart Center in Anchorage determined Quinlan had tetralogy of Fallot — a structural problem with the heart present at birth.
About four in 10,000 babies born each year in the U.S. are born with tetralogy of Fallot, according to the U.S. Centers for Disease Control and Prevention (CDC) website.
“It’s pretty rare,” Gray said.
Tetralogy of Fallot is a combination of four defects, according to the CDC. Those include a hole in the wall between the ventricles, narrowing of the tube that carries blood from the heart to the lungs, the aorta grows from both ventricles (rather than from the left ventricle only) and a thickened muscular wall of the right ventricle.
The cause of tetralogy of Fallot is unknown, according to the website.
Receiving the news three months before Quinlan was born, Gray went online to learn as much as she could about his heart disease. But not all the data online was applicable to her situation, Gray said.
“You’re trying to grapple with what this is,” she said. “The Internet is your friend and your foe.”
Without a pediatric thoracic surgeon in Alaska, Gray opted to deliver Quinlan in Seattle. It was the right decision.
Five hours after being born March 26, 2009, at the University of Washington Medical Center, Quinlan was medevaced to Seattle Children’s Hospital. He needed open heart surgery.
Had Gray stayed in Alaska, flying Quinlan to Seattle for surgery might not have been possible. Eleven days before Quinlan’s birth, Mount Redoubt erupted — the first of 19 explosive events over a two-week period. Flights were grounded due to ash spewing from the volcano, which is located about 100 miles southwest of Anchorage.
Gray said she was fortunate she could afford to leave Alaska so Quinlan could be near a pediatric thoracic surgeon if needed — which it was.
Gray said doctors waited 10 days so Quinlan could gain as much weight as possible.
“They bought as much time as they could,” she said.
The surgery was a success. Doctors were able to make a full repair, and the delicate operation was completed in less than the anticipated eight hours.
“That was probably one of the very best days of my life,” Gray said.
Gray said she was in awe of the doctors’ ability to operate on an infant.
“His heart was the size of your thumb,” she said.
Gray was impressed with the medical staff’s dexterity, empathy and overall care her son received.
“I gained a whole new appreciation for the medical field,” she said.
Gray took her daughter Jordyn, now 4, to Seattle in early February 2009. Gray, who works for architectural and engineering firm USKH, was able to work remotely. David, a project manager for ESS Support Services, had to stay behind for work.
Seattle appealed to Gray on two levels. It offered top medical care and her father and friends lived nearby.
“We had lots of friends and family that were supportive,” Gray said.
Quinlan’s recovery did not mirror his surgery. He contracted sepsis and spent more than five weeks in the hospital, Gray said.
A host of medical personnel hovering around her son tipped Gray off that something amiss.
“When 30 doctors and nurses are in your child’s ICU room, you know something is seriously wrong,” she said.
Once released from the hospital, Gray administered Quinlan’s prescription drugs via an IV three times a day for five more weeks.
“Basically, we didn’t go anywhere,” she said.
Reflecting on the past
Gray said sometimes she reflects on her son’s first two years of life and can’t believe what happened.
“We had our moments that were very anxiety ridden,” she said.
But Gray said she was able to remain composed most of the time.
“I was actually surprised at the ability to just be calm and patient,” she said.
Religion, too, played a major role throughout Quinlan’s surgery and recovery.
“For us, it was faith that got us through,” Gray said. “I just gave it to God.”
The Heart Walk has a one-mile and a three-mile route. Festivities begin at 9 a.m. with the walk starting at 10 a.m. at Delaney Park Strip on 10th Avenue and N Street. Participants can register at www.anchorageheartwalk.org or call 865-5300.
Proceeds benefit the American Heart Association. Gray is raising money specifically for pediatric heart disease. She’s part of a group, Moms with Heart, a pilot program consisting of 63 teams on the West Coast.
With $2,500 raised, Gray said she currently ranks No. 7 for top Moms with Heart fundraisers.
“My goal is to be in the top five,” she said.
An estimated 81.1 million American adults have heart disease, according to the American Heart Association, and it is the leading cause of death in the U.S.
Quinlan isn’t the first baby in the family with heart disease. David’s brother also underwent heart surgery shortly after birth, Gray said. The boy contracted pneumonia following the surgery and died at age 2, before David was born, she said.
No conclusive genetic link has been found, Gray said, but additional research needs to be conducted.
“They really can’t pinpoint the cause,” she said. “There’s just not enough research.”
Today, Quinlan — the maiden name of the boy’s paternal grandmother, who died just after David and Lydia were engaged — is an average 2-year-old. He colors, jumps on the furniture and fights with his sister, Gray said.
“He does all the things a little kid is supposed to do,” she said.
The prognosis is good for babies with tetralogy of Fallot who have surgery.
“Ninety percent survive to adulthood and live active, healthy and productive lives,” according to the U.S. National Library of Medicine.
For now, Gray said she is focused on living in the present.
“One step at a time, one day at a time,” she said.