Meet Jake: Survivor of a rare congenital heart defect, lover of trains

Jake was born with half of a heart in 2010. It’s a congenital defect called hypoplastic left heart syndrome (HLHS), which prevents normal blood flow through the heart. He has had three open heart surgeries, a complete airway reconstruction, many cardiac catheterizations and other procedures. Some day, he might even need a new heart.

“The unknown for the future is always scary, but he’s brave, so I can’t help but to be brave for him,� Kathy Baker said.

According to the Centers for Disease Control and Prevention, one out of every 3,955 babies are born with this condition each year. Prognosis for HLHS continues to improve but data collected between 1979 and 2005 showed overall survivability at 24%.

It is fatal without surgical intervention and responsible for 25% to 40% of all neonatal cardiac mortality. Studies have shown one-year survival rates for HLHS range from 20% to 60%, with relatively stable five-year, 10-year and 15-year survival rates of about 40%.

Jake also shows the broad range of people and conditions represented by American Heart Month.

Celebrated in February, American Heart Month was designated to raise awareness about heart disease and how to prevent it. This is the top cause of death for Americans.

Doctors predicted Jake wouldn’t live past age 5.

“And they basically were like, ‘You can terminate, but you’ll have to go through picket lines and do this.’ And I was like, this is a baby we wanted and prayed for. So we decided … we were going to do everything possible,� Kathy Baker said.

Today, Jake lives a fairly normal life. Kathy Baker said her son has had COVID-19 twice and fared better than anyone else in their family.

“You would think that he’d be low energy, but this kid goes, goes, goes. I mean, he has lots of energy,� she said. “I remember when he was little, we were at Gritt’s Farm and all the other kids were like, having their parents pull them up the hill in wagons and Jake was just charging up that hill like nothing.�

She said he will get winded sometimes and will make sure he takes a break. He also has low oxygen levels and takes extra precautions to avoid getting sick. He has more trips to the doctor than most people. His family travels to Cincinnati at least once a year for monitoring. Even for dental work, he needs cardiac anesthesia.

Despite having a fear of hospitals and needles, Jake — who turns 15 in March — keeps up a good mood. During a recent visit in December, he was singing Christmas songs.

“He had those nurses and the doctors and surgeons just smiling ear to ear,� Kathy Baker said. “It wasn’t even the medicine making him — he just was so relieved that it was done. He turned to music and that helped him, and everybody loved him. They were like, ‘He just made our day!’�

“I just wanted to sing my heart out — Christmas carols, you know, I’m talking Bing Crosby, Frank Sinatra, Dean Martin,� Jake said.

They make the most of each trip. Kathy Baker said they usually plan a fun activity so they have something to look forward to. Until it recently closed, Jake’s favorite Cincinnati activity was visiting EnterTRAINment Junction. In addition to 1950s and 1960s music, he is a big fan of model trains.

They missed the annual Hurricane Christmas parade this past holiday season, which was themed around “The Polar Express.� Mayor Scott Edwards, who has become a friend of the family, showed up to the Bakers’ home on Christmas Eve with the conductor from “The Polar Express� as a surprise.

“He’s definitely my friend and my buddy, and I would do anything for Jake, and he knows that. And he would do anything for me to his ability. He’s a wonderful young man here in Hurricane,� Edwards said.

Edwards said the pair talk about history together, which is another one of Jake’s passions — specifically West Virginia history.

“He knows a lot more than I do,� Edwards said. “He’s extremely smart. He loves history. He loves facts about all history, about everything, whether it’s Hurricane or really anything. He’s definitely a history buff for sure. So if you want to learn something, you call Jake, he’ll teach you or he’ll know the answer.�

The Bakers have been sharing their story since before Jake was born.

The ÂÒÂ×ÄÚÉä Daily Mail first published their story in February 2010 while Kathy Baker was pregnant. Then there was an update when he turned 1 in March 2011. There was also a story in the ÂÒÂ×ÄÚÉä Gazette’s Metro Putnam edition when Jake and his older brother, Aidan, raised money for the American Heart Association in March 2013.

Kathy Baker also worked to get a bill passed when Jake was a few years old, ensuring that all babies must have a pulse oxygen test before being discharged.

“It saves lives and at least one family has reached out to me that their child wouldn’t have survived without it. It caught their child’s heart defect before discharge,� she said.

For Jake’s birthday present this year, he told his mom he wants to bring awareness about heart defects and raise money for charity.

“Jake has been a wonderful ambassador for the work that we do with congenital heart defects and … he’s a wonderful success story when you look at the surgeries he had to go through when he was so young and to see where he is now,� said Kevin Pauley, communications director at the American Heart Association of West Virginia. “It’s just a real testament to the work that we do and how it can improve the lives of all ages.

“Most people think of heart disease as an older person’s disease, and yet you see a kid like Jacob especially when he was little … you would not look at that kid and think he had heart problems, and yet he had numerous surgeries by the time he even showed up to the ÂÒÂ×ÄÚÉä Heart Walk.â€�

The Huntington Heart Walk will be Saturday, April 12, at Ritter Park. The American Heart Association’s fundraising goal for the event is $75,000. The ÂÒÂ×ÄÚÉä Heart Walk will be in October at GoMart Ballpark and the fundraising goal is $120,000.

To patients with HLHS and their parents, Jake and Kathy Baker each have advice to inspire hope.

“When parents reach out to me, it’s hard because you don’t want to tell them their baby’s going to survive because a lot don’t, and I have heart moms I’m super close with that have lost their child and we’re still super close. So I always tell them, ‘I can’t tell you what’s going to happen. I can just tell you to go to a center that knows what they’re doing, go to a center that has dealt with hypoplastic left syndrome, ask a lot of questions,’� Kathy Baker said.

“Make sure you always pray to God,� Jake Baker added. “Be brave and just fight, fight, fight. Just fight until you’re healthy. Pray to God, drink a lot of water. Eat a lot of healthy food. And just basically let the doctors do their thing and just chill.�