One week after their son was born, Melissa and Cory Berlin of Mayfield, New York, arrived at the pediatrician’s office for Colton’s first well-baby checkup. The 23-year-old, first-time parents were eager to learn his height and weight measurements.
While examining Colton, the doctor said she’d be right back. She needed to get the practice’s other doctor. Melissa looked at Cory, wide-eyed.
“Something is really wrong,” she said.
“I’m sure he’s OK,” said Cory.
Melissa squinted at Colton’s arms. They were tinged blue. Maybe he’s just cold, she told Cory. The doctors returned to the room in a flurry, their faces somber.
They listened to Colton’s heart and breathing again.
“Your son is in heart failure,” the other doctor said. “You have to get to the ER right now.”
An ambulance rushed the family to a medical center in Albany, an hour away. Doctors did an echocardiogram, an ultrasound that takes an image of the heart and its blood vessels. It showed Colton’s left ventricle was tiny and not functioning.
He had a congenital heart defect known as hypoplastic left heart syndrome. His organs were slowly shutting down because not enough blood was reaching them.
That caused a condition called disseminated intravascular coagulation, or DIC, a rare blood clotting disorder that can lead to uncontrollable bleeding. For Colton, it prompted a stroke.
Colton spent five days in the neonatal intensive care unit. At one point, he stopped breathing. Doctors were able to stabilize him. They also drew up a plan. Colton needed a series of surgeries starting right away to re-route blood flow in his heart.
At 12 days old, the first operation re-routed blood so Colton’s right ventricle could take over for the left, pumping blood to his body and lungs.
The surgery was successful, and Colton came home a few weeks later. Melissa’s parents, both nurses who’ve worked with cardiac patients, lived across the street. They came over to check on Colton every day.
At nearly 8 months old, Colton had a second surgery to refine the re-routing of blood. That operation went well, too.
Colton was lucky that his condition was detected when it was. But it likely would’ve been caught even sooner had he undergone a non-invasive test to measure his oxygen level right after birth.
A low oxygen level can signal a congenital heart defect, which is the most common kind of birth defect. Around 1 in 100 infants born each year in the U.S. have a heart defect, and pulse oximetry screening is estimated to help single out over 90% of cases.
Since 2018, all 50 states and Washington, D.C., have newborn screening programs to test for critical congenital heart defects. However, when Colton was born, New York did not have those in place.
Around Colton’s second birthday, the Berlins were among several parent advocates who shared their story with legislators at the New York State Capitol in support of a pulse ox law.
“He had a single functioning ventricle in his heart and it was missed in utero, but was something that would have been picked up had he had pulse ox testing,” Melissa said in her testimony, tearing up as she held Colton in his red “Heart Hero” cape.
Meanwhile, Colton had his final surgery to complete the re-routing of blood in his heart. It was a success. After that came more good news.
New York Gov. Andrew Cuomo signed the pulse ox bill into law, and it took effect in January 2014. Now, every baby born in New York state has their oxygen level tested before they’re discharged from the hospital.
Today, Colton is 13 and he’s thriving. The eighth grader can’t play contact sports, but he plays soccer and basketball and runs track. He was recently inducted into the National Junior Honor Society for his academic performance.
“He’s a typical 13-year-old boy,” Melissa said. “You would not have any clue if you saw him that he has anything going on with his health. Nothing holds him back. It’s a hidden disability. Sometimes I can’t even believe that we went through what we went through.”
Colton loves to wake surf and downhill ski, too, and he’s interested in becoming a firefighter. He gets an echocardiogram every six months and takes various medications.
He also sees a liver specialist. Some people with his condition ultimately go into liver failure because the re-routing of blood ends up damaging the liver.
“They can’t really give you a road map,” Melissa said. “His surgeries are considered palliative, and his condition is lifelong. So, it’s wait and see.”
The Berlins also have a 9-year-old daughter, Callie, who’s healthy.
Together, the family continues to share Colton’s story to spread awareness about congenital heart defects. Colton was an auctioneer at the American Heart Association’s 2024 Capital Region Heart Ball. He’s also an active member of his local AHA Cardiac Kids group.
The Berlins participate in the AHA’s annual Capital Region Heart Walk, and Colton has spoken to school assemblies as part of the nonprofit’s Kids Heart Challenge.
“I do it so other people can hear my story,” Colton said. To kids he meets with heart issues, he tells them to “just keep pushing through it.”
Melissa and Cory often think about what their pediatrician told them years after they knew Colton would be OK. The doctor said that had they not had an exam that day, they likely would have put Colton down for a nap and he never would have woken up.
“We are so fortunate,” Melissa said. “Not a day goes by that we don’t think he’s a miracle.”
Written by Deborah Lynn Blumberg.
If you care about heart health, please read studies about how eating eggs can help reduce heart disease risk, and Vitamin K2 could help reduce heart disease risk.
For more information about heart health, please see recent studies about how to remove plaques that cause heart attacks, and results showing a new way to prevent heart attacks, strokes.
