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SALT LAKE CITY — It was a big day for 11-year-old Jaxsten Shepherd, who sat on an examining table waiting anxiously for his doctor. Jaxsten was born with half a heart — literally. The boy, who wants to be a movie director someday, was born with hypoplastic left heart. He's missing the left part of his heart: the atrium and ventricle.
The goodbyes with his mother and father are tender as doctors whisked him away. His father wiped away tears as he hugged him, and his mom bent down and gave him a kiss.
"He is a miracle," said Tammy Shepherd, Jaxsten's mother, who lives in Levan. "He's just done so well. He's doing amazing."
One in every 100 babies in the United States is born with a heart defect. Of those, single ventricle heart defects are the most complex. The new Single Ventricle Survivorship Clinic at Primary Children's Hospital brings together doctors of many different subspecialties to keep patients like Jaxsten healthy.
Tammy remembered the day he was diagnosed in utero.
"It was honestly one of the hardest things I've ever been through," Tammy said. The hardest thing I've ever had to do was come home and tell Tyler about it cause he's waited a long time for a little boy."
Doctors first told Jaxsten's parents their baby needed a heart transplant. They never gave up hope, and doctors didn't either.
"They need at least three surgeries in their first five years of life. Starting immediately after birth," said Dr. Shaji Menon, cardiologist, Primary Children's Hospital. "These are open heart surgeries, major surgeries."
Inside the sterile cath, lab doctors entered his heart through a catheter in his groin. They measured Jaxsten's heart pressure and performed other tests. Later, they will take the results to the clinic where all the doctors can weigh in. It's a meeting of the minds to save a young child's heart.
"They have problems with their liver, their lungs, their muscle mass, their growth and development," Menon said.
The specialists will monitor Jaxsten's entire body until he's an adult. It's a team with a plan: a medical marvel to keep Jaxsten here.
Tammy and her husband, Tyler, couldn't be happier: "Every day you buy is another day that miracles can happen," she said.
