For youngster and family, return to Alaska after series of heart surgeries marks new chance at life – and opportunity to raise awareness

ANCHORAGE, Alaska (KTUU) - Complicated conditions, rare or not, often require Alaskans to travel to the Lower 48 for treatment.

Such is the case for Amber Kurka and her 4-year-old son, Liam, who for years have been back and forth from Texas to give the youngster a shot at a brighter future after he was diagnosed with hypoplastic left heart syndrome before he was even born.

“They found out that there was something wrong with the heart,” explained Kurka, who at around 28 weeks pregnant – though considered higher-risk in general – just so happened to go through a set of tests that indicated an issue. “So, we went in to a cardiologist to kind of confirm, and it was worse than what we originally thought.

“We knew that he was going to be complicated,” she continued. “And there’s very few hospitals that actually deal with (HLHS), and also deal with it successfully on a regular basis. So we bypassed Seattle and went directly to Texas Children’s Hospital.”

Kurka described HLHS, in part, as a blanket term for any defect or combination of defects that cause the left side of the left ventricle of the heart to not develop properly. It is a complicated, life-threatening condition that affects the way the blood can flow through the heart.

The Centers for Disease Control and Prevention says more than 1,000 babies are born with the condition each year; that’s a rate of one out of every 4,000 children, according to CDC data.

For Liam, however, HLHS was combined with what’s known as a restrictive atrial septum, the diagnosis of which indicates the lack of a hole, or only an unusually small hole, between the left and right upper chambers of the heart. Kurka said only about 1 in every 10,000 infants is estimated to suffer the combination of complications that Liam has, which is described by the American Heart Association as “highly lethal.”

“It was causing his lungs to come under pressure before he was even born,” she explained. “Usually, with HLHS, they’re safe in utero, but with the restrictive atrial septum, that causes lung pressure to build.”

Notably, that condition is different from what the CDC classifies in general as an atrial septal defect, which is a birth defect of the heart where there exists a hole in the wall, or septum, that divides the upper chambers, or atria, of the heart. Atrial septal defect is seen “often” in babies with HLHS, according to the CDC.

Liam’s hospital experiences list is a long one; cardiac arrest, a stroke that caused cerebral palsy, and days on life support are things he knows first hand.

“No parent should have to see that, in any capacity,” Kurka said, describing Liam coding before he was even a month old, “but unfortunately, a lot of heart parents have.”

Treatment for HLHS can help restore heart function, and is usually done in three different stages. First, through the Norwood procedure done within days to a couple of weeks after a baby’s arrival, doctor’s create an aorta and connect it to the right ventricle and implant a tube to help the right ventricle pump blood to the rest of the body; next is the bi-directional Glenn shunt procedure, which creates a direct connection between the pulmonary artery and the vessel so that oxygen-poor blood can return from the upper part of the body to the heart; and third is the Fontan procedure, done within the first few years of life, in which the pulmonary artery and the vessel returning oxygen-poor blood from the lower part of the body to the heart are connected. Once the third stage is complete, oxygen-poor and oxygen-rich blood no longer mix in the heart.

Months passed before Liam could initially be released from the intensive care unit, let alone the hospital itself. Kurka pointed out a timeline for a series of surgeries connected with HLHS that usually end up happening around the same age for children diagnosed. For early surgeries, the typical timeline ends up being one each at four days old, four months old, and four years old. Liam went into surgery right away when he was born, and saw a third open heart surgery by the time he hit the age of 4 months and 3 days.

He was then kept under watch to ensure that he survived withdrawal from the various medications, including opioids, that he had to be on.

When he was discharged for the first time, in May of 2019, Kurka was thrilled, and her child could hardly contain himself.

“You get so used to the hospital,” she explained. “It was the strangest thing. We were so excited. I did a Facebook live for our friends and family, and I remember putting him in his car seat, and he was just all smiles. He thought it was the greatest thing ever.”

Kurka even had Liam donning a Mr. Incredible onesie after his nurses kept saying the little tyke looked like Jack-Jack from the Disney-Pixar film, The Incredibles.

“I was like, okay, we’ll put this here for the nurses,” she said, “because at a point, the nurses become your friends.”

It can be difficult to find support for cases such as Liam’s, too, especially in a place like Alaska, but together, he and his mom are working to help others in similar situations, spreading the word about HLHS one day at a time.

“I will say, my faith has gotten me through all of this, 100 percent,” Kurka said, adding that her second family, which she found at church, has made all the difference. “Especially going into this fourth surgery, it was our faith community, our friends and family and businesses in Anchorage really stepped up to help us out, financially, spiritually.

“The mom group that I’m a part of, they were instrumental,” she gushed of her support system at ChangePoint Church in Anchorage. “These gals were texting me on a regular basis, checking up on me, checking up on Liam, and that support system was so important to us this whole time.”

Liam is now done with the series of surgeries meant to help repair his heart and restore its function. Kurka said his blood oxygen levels, which were previously regularly in the 70′s range, are now up to the mid-90 percent mark: a life-changing improvement, but not necessarily the end of the challenges.

“There is no cure for heart defect,” Kurka said. “And I always get the question, ‘Why don’t you just have a transplant, if it’s that bad? With a transplant, you’re trading one set of risks and complications for a whole new set of risks and complications.”

Kurka, beaming with love for her child, described Liam as strong, joyous, and outgoing, with a penchant for anything Halloween-related.

“He is chaos,” she laughed. “This kid loves Halloween. His favorite movie is Nightmare Before Christmas. When we got home, before we left (again), the Halloween store was a big thing. He was very upset when he realized there was no Halloween store this spring. So when he saw that the Spirit Halloween sign was up on one of the buildings, to say, ‘Hey, we’re coming soon,’ he was like, ‘Mom! The Halloween store! It’s going to be open soon!’”

For the next journey away from home, Kurka hopes Liam might be selected for a Make-a-Wish adventure.

“Literally, every time he watches a Disney movie, he points to the castle and goes, ‘Mom, I need to go to Disney World! And I’m going to go into that castle!’” she laughed, adding that someone decided to divulge to Liam that there’s a Disney event called the Oogie Boogie Bash, which is all themed for the Nightmare Before Christmas. “So, we’ll see if that happens.”

You can get updates and help support Liam along his journey on the Facebook page, ‘Heroes for Liam.’ There you can also find a link to purchase apparel – featuring custom artwork done by his uncle – to contribute to the cause.

Author’s note: This story has been updated with additional information.

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