HUTCHINSON, Kan. (KSNW) – Andrew and MaKenzie Villarreal were as excited as any first-time parents to welcome their son Brysen into the world.

But when MaKenzie went in for her 18-week anatomy scan, they knew something would be different about their journey.

“[The nurse] ended up handing us like a whole pamphlet of sonogram pictures. Which was really odd … we had never gotten that many before,” said MaKenzie.

After being referred to a maternal-fetal specialist, the diagnosis came in: Hypoplastic Left Heart Syndrome.

“He’s essentially a normal, happy baby other than living with half a heart,” MaKenzie said about Brysen – who is now almost two years old.

Brysen has undergone two open-heart surgeries at Children’s Mercy Hospital in Kansas City. He has another planned for this summer.

“Our amazing cardiothoracic surgeons do a series of surgeries to make sure blue blood goes to the lungs and gets oxygenated and red blood goes to the body,” said Doctor Aliessa Barnes of Children’s Mercy Hospital.

Brysen also requires doctor visits every three months. He is currently prescribed daily aspirin.

“It’s put a lot of strain. But it’s so worth it, and I would do it again,” said MaKenzie.

And while Brysen doesn’t look different at first glance, he is one of many kids living with Congenital Heart Disease (CHD). Dr. Barnes explained that looking okay doesn’t mean the diagnosis is any less severe.

“Congenital heart disease is actually one of the most common birth defects… Around one for every hundred babies born,” Dr. Barnes said.

As a cardiologist, she understands the emotional and physical strength it takes for families to go through the treatment process.

“The resilience of the family, obviously the patient, is why I went into pediatrics. Every day, kids teach me what real bravery looks like,” Dr. Barnes said.

And she is dedicated to raising awareness to gain resources and support for those affected.

“If we have a friend who says their child has Congenital Heart Disease, you are worried about them. But to really understand what it is can allow us to all help each other more,” Dr. Barnes added.

MaKenzie couldn’t agree more.

“Get yourself aware because you never know if you have someone living next to you or in your community that has one of these diagnoses. And the more people know, the more we can donate, and the closer we can get to a cure for these babies,” she said.

MaKenzie and a group called Kanas City Heart Moms are hosting a free CHD event Saturday in Basehor, Kansas. The goal is to advocate for the kids they call “heart warriors.” They will have vendors and a raffle. The Red Cross will also be there taking blood donations.

“During these surgeries, a lot of our babies have had multiple blood transfusions, and so this helps a lot,” MaKenzie explained.