Gavin's story

Gavin was born with truncus arteriosus, a rare heart defect that occurs in less than 1 out of every 10,000 births

Just hearing Becky Verbos list all the different specialists she had to take her son Gavin to see in his first few years of life can be daunting. There were regular appointments with doctors from cardiology, ENT, audiology, genetics, asthma/allergy, pulmonology and urology. All this, in addition to the little guy needing to have heart surgery at just 21 days old.

Thankfully, she was able to get everything done at the same place: Children's Wisconsin.

"The hospital is just amazing," Becky said. "All of the staff, and all of the people I've encountered in the last five years, I can't say that I've ever felt like anyone wasn't willing to go 10 extra miles more than they needed to for anything that you asked. It's an amazing place."

Gavin was born with truncus arteriosus, a rare heart defect that occurs in less than 1 out of every 10,000 births, according to the Centers for Disease Control and Prevention. The two main vessels – the aorta and the pulmonary artery – stay connected and fail to separate completely as the fetus develops, causing too much blood flow to the lungs. This leads to a host of health issues, including difficulty breathing, rapid heart rate, feeding troubles and poor weight gain.

Complicating cases like Gavin's is that truncus arteriosus never comes alone. Gavin eventually was also diagnosed with CHARGE syndrome, which encompasses several other birth defects that affect hearing, vision and smell. As a result, Gavin is deaf in his left ear, and has partial hearing loss in his right. Despite it all, Becky said he is a happy kid who is becoming adept at learning sign language and is someone other people gravitate to.

Many doctors have been helped Gavin get to this point, but Becky has special praise for Michele Frommelt, MD, of the Herma Heart Institute, who has been Gavin's doctor since before he was born. Beyond all the medical expertise Dr. Frommelt offers, Becky truly appreciates the personal touch she brings to her care.

"She talks to Gavin and gets on his level," Becky said. "She wants to know what he's doing outside of just how his heart is. And she looks to me to see how we're doing as a family, how are things going in life, to really get the whole picture. I know not every doctor has the time for that, and I don't expect them to do that. But that's what makes her special. I feel so lucky to have met her."

The family, which consists of Becky, Gavin, his 7-year-old sister, Madelyn, and Becky's fiancé, Brad, recently moved from West Allis to Waukesha so that Gavin could have access to more educational opportunities designed for hard-of-hearing students.

Dr. Frommelt had kind words to say about Becky as well, calling her a "remarkable mom. I've just always been impressed with how she handles everything that comes their way. She's so easy to work with, and I really like her a lot."

As overwhelming as those first few years were, when Gavin was being seen regularly by so many doctors, today's routine is much more stable. It's now just annual appointments with an ENT specialist (Robert Chun, MD) and seeing Dr. Frommelt for an echocardiogram. Also gone are the daily medications, nebulizers and inhalers. Gavin likely will need another heart surgery around age 10, but otherwise his outlook is quite positive.

Becky said Gavin does not let his health issues get him down. In fact, he tends to take control of the situation, doing things like helping his doctors put their stethoscopes in the right place during appointments. He also has been known to break into song to help entertain parents waiting for an elementary school concert to start.

"For such a small person, and someone who's been through so much, he's just really a shining star," Becky said. "He's always the kid where everyone says, 'We love Gavin!' All the teachers love him, the other kids, even the kids who are years older than him at school know him and will say hi to him in the hallway. He's just really great personality. I think he's going to do a lot in life. He's very driven and positive … and silly."

The care she and her son have received at Children's has even carried over to Becky's working life as a nurse. Being on the patient side, and knowing how important that personal touch has been has prompted her "to make sure I'm making a lot of eye contact with my patients, and that I'm really listening to what they need and what they're saying. Being on the other side really makes you aware of that so much more."