A Little Hat With A Big Message

"Little Hats, Big Hearts" Spreads Awareness Of Congenital Heart Defects

Colton Byrnes has battled more in his eighteen months than most will in a lifetime.

He has Truncus Arteriosus, a congenital heart defect, among multiple other health complications.

Congenital Heart Defects, or CHDs, are the most common birth defect among newborn babies in the United States.

The American Heart Association says one in every 125 newborns is affected by at least one of twenty-five different types of identified CHDs.

His mother, Aubrey, said three open heart surgeries haven’t slowed him down.

“Today, he’s a stubborn eighteen month old boy who loves to get into everything and he is quick and he can move fast,” said Aubrey.

She knew Colton would be a unique child from her first ultrasound.

Doctors could not identify Colton’s brain, spine or other vital signs to show a grown fetus.

After twenty weeks, Aubrey and her husband were prepared to have a stillborn birth.

At her twenty week ultrasound, Colton was a completely formed baby.

A boy that Aubrey describes as someone who “abides by no schedule”, she said her son is a little fighter.

“He still has underlying heart issues that will need to be fixed in time. He’s had twenty-plus other surgeries in addition to heart surgeries but he’s a very normal little child,” said Byrnes.

She said she wants to help get the word out about, so others can try to get ahead of the disease.

“I think that if you asked ten years ago about CHD’s, people would have no idea what you’re talking about,” Byrnes said.

The American Heart Association’s “Little Hats, Big Hearts” project goes through the month of February

Nurses place red knitted hats on newborn babies to raise awareness for CHDs.

Since 1999, the American Heart Association says the rate of deaths from CHDs in the U.S. have decreased 37.5 percent.

The awareness, however, isn’t simply for newborn children.

Dr. Edgard Bendaly, a pediatric cardiologist at Sanford Children’s Hospital, is one of only two American Board Certified doctors in the South Dakota for treating adult CHDs.

He said advancements in technology have shown more adults have CHDs than children.

“While it might sound weird having like a 40 or 50 year old individual coming to the (Sanford) Castle but we have patients in that age group,” said Dr. Bendaly.

Dr. Bendaly said he thinks the awareness should focus toward adults who haven’t been diagnosed and may have been living with a CHD their entire life.

He said collaboration with adult cardiologists could help prevent CHD complications like heart attacks.

“This is where the adult cardiologist will be crucial to helping us with their care and we can take care of their congenital heart disease where we have the expertise in taking care of them.”    

Aubrey said she has confidence it won’t be an issue for her little fighter.

“I definitely think that by kindergarten, if you see Colton, you’re not going to have any idea what are first five years of life were like,” said Byrnes.

Dr. Bendaly said symptoms of CHDs in children include troubles feeding, growth problems, and a blue color at birth.

In adults, those symptoms can include murmurs, high blood pressure, and difficulties breathing during exercise.

The American Heart Association recommends contacting your doctor if you have any questions or concerns about CHD.