As a mother of four children, Laura Stennett says seeing her kids hit their milestones is thrilling, to say the least.


But for her baby Willow, those achievements are harder to come by. The 3-month-old’s most recent milestone is hitting 8 pounds.


“She’s not even on the weight scale,” said Stennett. “She weighs about as much as a newborn.”


Willow has two holes in her heart, which means just breathing is an overextension. And eating out of anything but a feeding tube is out of the question for now, which is initially how Stennett found out about her baby’s condition.


willow heart feeding


“She wasn’t awake enough to eat. I’d start to nurse her, and she’d fall asleep after three or four or five minutes at the most,” Stennett recalled. “And it usually takes 20 to 30 minutes when they’re new like that to get a full feeding.”


Willow’s pediatrician referred them to a local pediatric cardiologist’s office. A closer look revealed Willow had atrial septal defect and ventricular septal defect (a hole in the upper and lower chambers of the heart).


Congenital heart defects are the most common birth defect, notes Dr. Scott Wellmann of Alaska Children’s Heart Center. His pediatric cardiology office is one of two in the state. But there aren’t any pediatric heart surgeons in Alaska, he says.


“The number of cases for children who need heart surgery is too low to really have the number of cases we would want to maintain the surgeon’s skill,” says Wellmann, adding that his office sends only 20 to 25 patients to the Lower 48 for surgery a year. “You don’t want the surgeon to basically be saying, ‘Well the last time I did this kind of surgery, it was about two years ago.'”


Finding out Willow would need open heart surgery to repair it was devastating, Stennett says.


“They say it hits you like a ton of bricks,” she said. “I think I collapsed in the pediatrician’s office and just started crying.”


But learning their family would have to leave Alaska to get the procedure done was harder to wrap her head around. She and her husband (Brad Stennett of KWHL radio) felt beyond uninformed, Stennett said.


“I assumed for a while that her cardiologist was going to be doing the heart surgery. I just figured that’s what was going to happen, it would be done here,” she said. “I didn’t know that there was even the possibility of having to go Outside for heart surgery.”


Willow is headed to the Medical University of South Carolina, a strategic move on the part of her parents. Stennett has family in South Carolina, support to offset the stress of surgery.


Willow poses with her brothers, Connor and Tyler, and her sister, Arialle.

Willow poses with her brothers, Connor and Tyler, and her sister, Arialle.


“My sister and my aunt are gonna pick up the older kids as soon as we land and take them back to Spartanburg, which is a few hours away,” said Stennett. “So they can go play in the swimming pool and meet their great-grandmother and spend time with family and kind of have a vacation instead of being stuck in the hospital with me and my husband.”


More and more of Wellmann’s patients with more complex congenital heart disease, most who will need surgery within a week or so of being born, are being delivered out of state.


“We certainly have had cases where having that surgeon immediately available made a big difference,” he said.


The idea of going out of state for surgery can be “really overwhelming” for parents, says Wellmann. But more often than not, the families don’t need to uproot their lives and reside in another state for an extended period of time.


“Generally, most of the follow-up after surgery can be done here locally,” he says. “And that’s definitely a plus.”


As for Willow, best case scenario looks like a successful surgery with no complications and a quick recovery time, her mother says, so they can get back home.


“We’ve just got to patch her up and fix that hole, and then her heart should work like a normal baby,” said Stennett, adding that her baby girl still has a lifetime of milestones ahead of her.


The Peanut Farm, located at 5227 Old Seward Hwy, is hosting a fundraiser for Willow Friday, June 3, from 5 to 7 p.m. Proceeds from the benefit dinner and silent auction will go toward Willow’s care, travel expenses and medical costs. 


Contact Sierra Starks at sstarks@ktva.com and on Facebook and Twitter, @SStarksKTVA


The post Why potentially life-saving heart surgeries for babies aren’t an option in Alaska appeared first on KTVA 11.