The true to the heart story of the twin Frey girls from Danville

Almost any type of heart-related disease or ailment is always going to result in serious medical attention and generate immense concern for those affected. But, when it involves the very young, those born with a heart condition, that anxiety rises.

Danville resident Alana Abbot Frey and her husband Jared got the news in March of 2018. Twins were coming into their family. The two girls were born in November. By January, what were thought to be heart murmurs hadn’t cleared. Then, it was determined both infants had congenital heart defects.

Now five, Berkley sports a toothless spot upfront. Here’s her report on that.

“I thought it was a rock. It was a tooth. She thought it was trash,” said Berkley. “

She said mommy I have a rock in my mouth and gave it to me and it was a tooth,” said Alana.

“I got ten dollars from the tooth fairy,” replied Berkley.

Losing a tooth is quite different than the open-heart surgery performed on Berkley just over a year ago.

Going back to the days following the heart defect diagnosis, Alana said it was all about “uncertainty” at times.

“It’s all the what if’s..is this the appointment when they’re gonna tell us it’s time. Is this the appointment when they’re gonna tell us it’s worse. We didn’t know one minute to the next when what we were walking to and what to expect. The other part of that is we found out and within a year COVID hit,” said Alana.

Alana said during pregnancy there’s checking for spina-Bifada, down syndrome, and for all the digits. But, you may not learn that the number one defect in children involves the life-sustaining heart.

Berkley had a cleft mitro valve in her heart and a couple of holes not self-repairing. Mother Frey noted it was still a waiting game when it came to the six to seven-hour surgery.

“The surgery is based around the valve thickness and so they don’t want to do it when the valve is too thick or not thick enough. So they have to wait for kind of the perfect timing of when the valve is of the perfect thickness, so they can do their surgery and it’s the most successful,” said Alana.

A surgeon in Berkley’s case was Carl Backer, chief of cardio-thoracic surgery at the University of Kentucky. Backer said probably 50% of heart procedures in children are done between six months and a year. Much of that involves addressing holes in the heart. Dr. Backer has worked in pediatric heart surgery for three decades.

“There are cases that 30 years ago we never would have thought we could operate on and the children would either need a heart transplant or they would not survive. And now there are techniques that have been developed over the past 30 years where we can actually operate on those children and they can have an open heart operation and do quite well,” said Backer.

Backer said the sheer number of surgeries at UK has declined because many procedures are now done in the catherization lab. He noted that includes repairing holes, valve work, and tackling arrhythmias. Backer added a heart condition for the very young doesn’t mean the child has to slow down.

“Almost all of our children after they’ve had their heart surgery or even before depending upon the cardiac lesion is…they’re unrestricted in their activities. So, especially after you’ve had a successful cardiac surgical repair, and you don’t have any residual problems, then you would be completely unrestricted,” said Backer.

As far as pediatric heart transplants, Dr. Backer said those patients are sent to Cincinnati where UK has a collaborative relationship. He said about 25 heart transplants a year are done there.

Meeting up with Alana and her twins at the Boyle County Library came on the same day Lennox had performed some self-care at kindergarten.

“You ready…why did you cut your hair today? Asked Johnson

“How do you know?” responded Lennox.

And the answer to mom when she asked, according to one of the twins, because my brain told me to.

Lennox was born with a couple of holes in her heart and a mitro valve prolapse. She had her own surgery within six months of her sister, but no, not a heart procedure, but surgery to address a dog bite.

“But, yes as we were finally getting recovered from her and healing and able to allow her to do more activities that one then had to go to surgery…we started the whole disinfecting the house and you can’t do this and you can’t do that. It was like not our year. It was definitely not our year,” said Alana.

But, in August of 2024, it’s a whole different scene. When we spoke, the girls were getting ready for cheer camp the next day. Alana said she and her husband have seen bounce-back at work.

“This heart journey was just amazing to see how much, how resilient kids are and it didn’t affect her or prevent her from doing anything she wanted to do,” said Alana

“And that’s the case today, right?” asked Johnson

“Oh yes, there’s no telling them what to do and how to do anything…they will figure it out. They are full five-year-olds..full-blown personalities. And they know more than anybody….laugh,” said Alana.

And so after some time to ask questions, it was time to go downstairs in the library to pay a visit to Benjamin.

“Mommy, can I ask to hold the bunny. I love bunnies. I love bunnies. I want to take one home,” said Berkley

“Oh no.” said Mom.

“Why not?” asked Berkley.

“Because she said, cause momma says they poop everywhere. Would you like to clean it up,?” volunteered Lennox.

After what the two twin Freys have been through, maybe caring for a bunny would seem doable. But, mom and dad probably have other ideas.

As far as any future surgeries, Alana said there’s some uncertainty about that, but again, there’s no question, she and her husband have some active young ladies.

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