Anna-Gray: A Full Life with Adult Congenital Heart Disease

Some of Anna-Gray’s first memories are of being in the hospital for surgery. She was born with a severe congenital heart defect (CHD) and needed a series of three open heart surgeries to survive — the Norwood, Glenn and Fontan procedures.

Anna-Gray had her first heart surgery when she was a few weeks old, her second when she was a few months old and her third at around 4 years old. These surgeries helped her heart pump blood correctly and carry oxygen to the rest of her body. When she was 8 years old, she got a pacemaker to help her heart pump better. Now, Anna-Gray is 26 and in control of her health and her life.

A stronger demand for lifelong congenital heart disease care

Treatment for complex congenital heart conditions has vastly improved over the decades, which means more and more children born with these conditions are living longer, healthier lives. That’s why the demand for adult care for these patients has increased in recent years. When a child like Anna-Gray is born with congenital heart disease, it requires lifelong treatment and monitoring.

Having grown up in North Carolina, Anna-Gray now lives in Denver and has been part of our Adult Congenital Heart Disease (ACHD) Program for several years. She came to the University of Colorado to attend a graduate program. When she was planning to move here, her doctor told her about the ACHD program at Children’s Hospital Colorado — she had previously gone to programs in Boston and Philadelphia.

Anna-Gray loves her job at a nonprofit organization, and like many Coloradans her age, she enjoys hanging out with friends, cooking and baking, and going on hikes. However, unlike her friends, she occasionally visits Children’s Colorado for check-ups.

“I’m really thankful for my team here,” she says. “I have this whole huge team, I’m able to know what's going on with my body all the time and I know exactly who I need to call when I have questions.”

Transitioning from pediatric to adult congenital heart disease care

Growing up, Anna-Gray’s mother was a pediatric intensive care nurse, so she understood medical terminology and treatment better than most kids. As Anna-Gray got older, she started to take on more responsibilities regarding her medical care. This meant knowing who to call in case of an emergency, learning to make appointments, understanding her medication and much more. Luckily for Anna-Gray, she had some help preparing.

In North Carolina, she attended a camp for kids who have congenital heart defects.

“We learned a lot about nutrition and heart anatomy, and we also got to talk to one another and realize, ‘Oh, I'm not the only one with this long scar on my chest,’” Anna-Gray says. “And then another big part of the camp, when you got a little older, was that they talked about that transition to adult care.”

When she turned 18 and made that transition, she suddenly had to be the leader of her own health. Even though she attended the camp and had her mother to help, it was still overwhelming. But she also felt a sense of independence and pride as she began making the appointments herself.

Now she is the leader and advocate for her health and heart. She occasionally asks her mother to join her appointments virtually for the more complicated matters. For example, she’ll need to get her pacemaker leads replaced at some point in the near future, which will require another open-heart surgery. Anna-Gray's condition limits the pacemaker options available to her, but our ACHD experts help keep an eye on her pacemaker.

“When I ask about it, they say they're still doing good,” Anna-Gray says. “So, we just continue to monitor it, and I have my device at home that connects to me via Bluetooth like a little robot that transmits all of my pacemaker information to them (care team) nightly.”

Our team can often detect issues with the pacemaker before patients are even aware there’s a potential problem. This type of care allows people to live where they choose, rather than having to stay close to the hospital.

Continuing congenital heart care as an adult at Children’s Colorado

“Whenever I tell people that I go to the children's hospital, I say it's actually pretty fun because I get to look at these cool fish tanks, and there’s all this fun stuff on the ceiling when I'm getting my tests done,” Anna-Gray says. “But overall, I think ‘Well, I was born with it, and they stick with you through adulthood, so that’s pretty cool.’ And you’re dealing with the same doctors who had treated the same condition in children, so they know how your body transitions from childhood to adulthood and how it changes as you grow and get older.”

At Children’s Colorado, we start preparing kids and teens for living with congenital heart disease as early as 12 years old. Initially, their cardiologist will begin by speaking more directly to them about questions or concerns. With each subsequent visit, children can take a more active role in managing their disease. By the time they are 18 years old, the goal is for them to feel comfortable talking about their condition, surgeries and medications. This helps their confidence and reassures their parents that they can transition to a more independent life.

“Having a team ready to take over and transition patients through adulthood is just as important as the care they received as a child.”

Johannes Von Alvensleben, MD

Roni Jacobsen, MD, is Anna-Gray’s cardiologist. “Dr. Jacobsen, yeah, she rocks,” Anna-Gray says. She has been seeing Dr. Jacobsen for everything related to her heart, and she sees cardiologist Johannes von Alvensleben, MD, for her pacemaker.

Anna-Gray has already had some MRIs  and a cardiac catheterization at Children’s Colorado. She’s planning to get the pacemaker procedure done here as well.

For now, Anna-Gray is living life her way. She still takes medication and goes to check-ups, but she says she lives life pretty much as she pleases, which may not have been possible just a few decades earlier.

“I have my steps that I know to take if I am feeling a certain way,” she says. “But for the most part, I feel like I live a pretty normal life, and I’m grateful to still be able to pretty much do whatever I want to do.”

“The adage is that there are more adults with congenital heart disease than children,” says Dr. von Alvensleben. “This should both inspire us with how well these patients are doing and remind us that congenital heart care is a lifelong process. Setting the framework of care with patients early on empowers and develops a care relationship that lasts a lifetime.”