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Family raises awareness of infant heart disease

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MISSION — Arteries clogged by years of unhealthy habits are a typical image that comes to mind when hearing the words “heart disease.” 

“You automatically think of someone who’s older,” Mission resident Bobbie Cross said. 

Cross and her family are trying to change that perception by participating in the Sept. 28 Missoula Heart Walk and raising $1,500 for the American Heart Association in honor of their son, Colter. 

After Colter was born on Nov. 17, 2011, Cross and her husband Tyler took him home the next day after he passed all of the tests doctors put him through. 

What the Cross family didn’t know is that the hospital did not perform a pulse oximetry reading on their son. The test, which measures the amount of oxygen in the blood and requires nothing more than placing a band-aid like probe on the infant, is not mandatory, so many hospitals do not perform it. 

When Colter had his first visit to the pediatrician a few days later, the doctor noticed he had a distinct murmur. Tests indicated he had low levels of oxygen in his blood. He was immediately referred to a cardiologist who diagnosed him with truncus arteriosus, a rare condition caused by a single blood vessel leading out of the heart and incomplete lower wall of the heart. Normal hearts usually have two vessels and the lower wall of the heart is complete to prevent oxygen-rich and oxygen poor blood from mixing. 

“It was a complete shock to us,” Cross said. “They told us without surgery he wouldn’t make it.” 

That evening Colter was flown to Seattle Children’s Hospital to undergo heart surgery. He was 11 days old. 

Colter’s surgery was expected to last between six and eight hours, but complications made the procedure last longer. He went into cardiac arrest. It was 14 hours before doctors were able to get the infant off the bypass machine and onto life support. 

Colter was put on an ECMO machine that does the work of the heart and lungs. 

“They told us that night after the surgery that he wasn’t surviving day to day or hour to hour. He was literally surviving minute by minute,” Cross said. 

Colter developed an aggressive bacterial infection and necrotic pneumonia while on the ECMO machine. Doctors created a plan of attack to fight the infections, but those fell apart as Colter’s condition deteriorated. Finally, on Dec. 16, doctors told the Cross family they believed Colter’s lung was dead tissue and would have to be removed. He would need a lung transplant. 

His parents were stuck in Seattle traffic when they got the call that their son was crashing and they immediately needed to get to the hospital. 

“It was an emergency,” Cross said. “We had to consent over the phone to do a partial lung removal.” 

Cross said she asked the nurse to hold her son there as long as possible so his parents could tell him goodbye. By the time they arrived, Colter’s room was packed with medical staff. 

“They pulled us to the side and told us this was a Hail Mary,” Cross said. “We needed to tell Colter goodbye.” 

The goodbye was the first time in three weeks that Bobbie and Tyler had 

gotten to touch their son. 

“It was a beautiful moment,” Cross said. 

It was also a miraculous moment. Colter made an unexpected turn for the better. His oxygen levels improved and he kept improving without surgery to remove his lung. On Jan. 31, he came home. 

“There is no medical explanation as to why he got better other than a miracle from God,” Cross said. 

Now, Colter is a healthy 2-year-old who enjoys dancing, playing outside, and helping in the garden. He is off all of his medication, but will need three more heart surgeries before age 18. 

Bobbie and Tyler Cross want other parents to know how to recognize the signs they didn’t know to look for that indicate problems of the heart in newborns like blue and purple skin, rapid breathing and excessive sweating. 

They want parents to know to ask for a pulse oximetry reading for their babies. 

“It’s such a simple test,” Cross said. “It like a Band-Aid.” 

They said parents should know that more children die from heart-related defects and diseases than any other illness. 

“Babies are two times more likely to die of heart disease than cancer,” Cross said. “But cancer researchers have so much funding. Heart defects have a lack of funding.” 

According to the National Institutes for Health, $5.6 billion will be spent in 2014 on cancer research. Approximately $1 billion will be spent on heart disease research. 

It’s a statistic most people are unfamiliar with, said Valerie Topacio, organizer of the Missoula Heart Walk. Advocates like the Cross family help raise awareness. 

“Bobbie is just a phenomenal advocate,” Topacio said. 

Cross said she wants to start a mother’s support group for families with heart problems. For more information email mtheartmoms@gmail.com. 

The Missoula Heart Walk will be held at the University of Montana Oval on Sept. 28 from 8 a.m. to 12 p.m. Walking is free, participating in a 5-k run costs $20. 

Colter’s team had raised $550 of his $1500 goal by Sept. 12. To learn more about contributing visit www.missoulaheartwalk.org and find Team Colter Cross. 

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