After welcoming their son, Colton, Melissa and Cory Berlin from Mayfield, New York, attended his first well-baby checkup at the pediatrician’s office just a week later. As first-time parents at 23 years old, they were excited to learn their son’s growth measurements. However, during the examination, the doctor stepped out urgently to consult another physician, sparking anxiety in Melissa. “Something is really wrong,” she expressed to Cory, who tried to reassure her. Melissa noticed Colton’s arms had a bluish hue, leading her to speculate he might just be cold. The doctors returned, their expressions grave, and after listening to Colton’s heart and lungs, one of the physicians declared, “Your son is in heart failure. You must go to the ER immediately.”
The emergency team swiftly transported the family to a medical center in Albany, located about an hour away. Upon arrival, the medical staff performed an echocardiogram, revealing a critical issue: Colton’s left ventricle was underdeveloped and not working correctly. Diagnosed with hypoplastic left heart syndrome, a congenital heart defect, Colton’s organs were on the verge of failure due to inadequate blood flow. This condition also led to a serious complication known as disseminated intravascular coagulation (DIC), a rare blood clotting disorder that can result in severe bleeding, causing a stroke for Colton.
During the following five days in the neonatal intensive care unit, one particularly alarming moment arose when Colton stopped breathing, but medical professionals managed to stabilize him. A treatment plan was devised, necessitating immediate surgeries to reroute blood flow in his heart. At just 12 days old, Colton underwent his first surgery, which successfully enabled his right ventricle to take over the work of pumping blood to his body and lungs. After a few weeks, Colton was discharged from the hospital. His grandparents, both nurses with experience in cardiology, lived nearby and provided daily support to the young family.
By the time Colton turned eight months, he needed a second surgery to further improve the blood flow in his heart, which was also executed successfully. Colton’s early detection and intervention were crucial; however, had he undergone a non-invasive test to assess his oxygen levels at birth, his condition would likely have been identified even earlier. Low oxygen levels can indicate the presence of congenital heart defects, the most prevalent type of birth defect affecting approximately 1 in 100 infants annually in the U.S. With pulse oximetry screening, it’s estimated over 90% of congenital heart defects can be identified early. Although all states, including New York, had implemented newborn screening programs for critical congenital heart defects by 2018, such measures were not yet in effect when Colton was born.
When Colton was nearing his second birthday, his parents, along with other advocates, shared their story with lawmakers at the New York State Capitol to campaign for a pulse oximetry screening law. “He had a single functioning ventricle in his heart that went undetected in utero, a condition that would have been found with a pulse oximetry test,” Melissa testified, holding Colton in his red “Heart Hero” cape and becoming emotional. Eventually, Colton underwent his final surgery to completely reroute the blood flow in his heart, which also proved successful. In a positive turn, New York Governor Andrew Cuomo subsequently signed the pulse oximetry bill into law, which took effect in January 2014, ensuring all newborns in New York have their oxygen levels tested before leaving the hospital.
Today, Colton is a thriving 13-year-old who enjoys playing soccer and basketball as well as running track. While he cannot participate in contact sports, he has excelled academically, recently being inducted into the National Junior Honor Society. “He is a typical 13-year-old boy,” Melissa remarked, adding how healthy he appears. “You wouldn’t suspect anything unusual if you saw him.” Colton has an enthusiastic spirit and enjoys wake surfing and downhill skiing while aspiring to become a firefighter. He receives regular echocardiograms and takes medication, alongside consultations with a liver specialist due to potential complications related to his heart condition.
“There’s no definitive road map for his future,” Melissa explained. “His surgeries are considered palliative, and we must wait and see how his condition evolves over time.” Colton has a 9-year-old sister, Callie, who is healthy, and the family remains dedicated to raising awareness about congenital heart defects. Colton has taken on roles as an auctioneer for the American Heart Association’s 2024 Capital Region Heart Ball and participates actively in his local group. The Berlin family also engages in the AHA’s annual Capital Region Heart Walk, while Colton speaks to peers as part of the Kids Heart Challenge. “I share my story so others can hear it,” Colton mentioned, advising other children facing heart challenges to strive forward. The Berlin family often reflects on their pediatrician’s comments, recalling that had they not gone to that checkup, Colton might have been put down for a nap and not awakened. “We are incredibly grateful,” Melissa expressed. “Not a day passes that we don’t recognize our good fortune.”
