Family prepares for two-year-old's complex heart surgery Outside
WASILLA - A two-year-old Wasilla girl who was born with a serious heart defect is getting set to head Outside. Her family is hoping she’s a candidate for a serious surgery that could save her life.
To look at Kennedy Robinson you probably wouldn’t know she was sick, but when she lifts her shirt to show you her “trophy scars,” you see that she has had plenty of experience with the medical world. The scars represent the open heart surgeries she has had, so far.
Kennedy’s journey began before she was even born. Her mother Beckey, was five months pregnant when she learned her little girl would come into the world with a serious heart defect called hypoplastic left heart syndrome.
“So that means she is missing the left side of her heart,” said Beckey, “which is the work horse of your heart; you cannot survive outside of utero without it.”
The family flew to Seattle for Kennedy’s delivery, then spent months there undergoing surgery and coming close to losing Kennedy more than once.
“We spent so much time in the hospital that first year,” said Beckey. “Watching your baby go through those surgeries was horrible, but once you get beyond that, well, she is awesome.”
Kennedy is medically fragile; she takes most of her food and medicines through a GI tube that is permanently implanted in her abdomen. But in many ways she is thriving. Intellectually advanced for her age, she is learning sign language so she can communicate should she require a tube in her throat after a future surgery.
And with any luck, that surgery will come sooner rather than later. The family is preparing to head to Stanford Medical Center in less than two weeks. There they will find out if Kennedy is a candidate to have a complicated surgery that could fix her heart. But the odds aren’t particularly good that she will be, and that leaves just one alternative, what could be a very long wait on a donor list for a heart transplant.
“Her progress is still very guarded,” said Anchorage cardiologist Dr. Sri Rao.
Rao said the defect that Kennedy has would not have been repairable at all 20 years ago. Babies who were born with it died. He said Kennedy is not a great candidate for either the surgery or a transplant, but she has managed to beat the odds many times and, hopefully, will do so again.
Kennedy’s mom said the wait to find out the next step for her daughter is hard to bear, but at the same time, she wouldn’t trade the experience.
“I knew that her life had a purpose when I was pregnant with her,” said Beckey. “Obviously, I didn’t know how long she would be here, but we treasure every moment.”
Kennedy’s family is holding a blood drive in Wasilla on Saturday, March 2 from 10 a.m. till 4:30 p.m. The idea is to raise awareness about congenital heart defects. There’s also a fundraiser for an organization that helps families with their children’s medical expenses.
The “Team Kennedy” Blood Drive will be held at 3030 N. Lazy Eight Court Board Rd. For more information you can call 907-315-3304 or email firstname.lastname@example.org