From Heart Failure to Advocacy: How One Teen Influenced Pulse Oximetry Legislation for Infants

Survival and Advocacy: The Story of Colton Berlin and Newborn Heart Defect Awareness

In an alarming turn of events just one week after becoming parents for the first time, Melissa and Cory Berlin of Mayfield, New York, experienced a life-altering moment at their son Colton’s well-baby checkup. As they anticipated confirming Colton’s height and weight, the attending pediatrician left to consult with a colleague, signaling an unexpected and grave concern. Melissa, noticing the blue tinged arms of her newborn, sensed the seriousness of the situation. The doctor’s somber return confirmed their fears: “Your son is in heart failure,” she announced, urging immediate transport to the emergency room.

An ambulance swiftly transported the family to a medical facility in Albany, where an echocardiogram revealed a critical condition known as hypoplastic left heart syndrome. This congenital heart defect entails underdevelopment of the heart’s left ventricle, significantly hindering blood circulation to vital organs. The consequence was dire; Colton’s organs were failing due to inadequate blood flow, resulting in disseminated intravascular coagulation, a rare blood clotting disorder, which led to a stroke.

Over the following days, Colton was stabilized in the neonatal intensive care unit and ultimately underwent a series of vital surgeries aimed at re-routing blood flow. Just 12 days after birth, surgeons successfully operated to enable Colton’s right ventricle to assume the role of pumping blood for his body and lungs. Following a challenging recovery, Colton returned home, supported closely by his nurse grandparents who resided nearby.

As Colton reached seven months, a subsequent surgery aimed at refining his heart’s blood flow pathway also proved successful. Despite these challenges, Colton’s condition went undetected during prenatal examinations. Advocates for newborn health emphasize that the implement of pulse oximetry screening immediately after birth could have ensured earlier detection. This test measures the oxygen level in the blood and can identify congenital heart defects, like Colton’s, which affect approximately 1 in 100 infants born annually in the United States.

Legislation addressing this issue gained momentum in New York after the Berlin family’s advocacy at the state Capitol, ultimately resulting in the signing of a pulse oximetry law in 2014. This mandated oxygen level testing for every newborn prior to discharge, thus enhancing early detection and improving outcomes for infants with critical heart conditions.

Today, Colton, who is now 13 years old, continues to flourish despite the long-term implications of his congenital heart defect. While he is restricted from contact sports, he actively participates in soccer, basketball, and track. He also received induction into the National Junior Honor Society for his exemplary academic performance. Colton plans to pursue a career as a firefighter and enjoys hobbies that include wake surfing and downhill skiing.

Colton’s journey underscores the importance of awareness surrounding congenital heart defects, and the Berlin family remains committed to advocacy through initiatives such as the American Heart Association’s Kids Heart Challenge. They routinely share their story, encouraging others to understand the significance of early screening and intervention for heart health in newborns.

As Melissa poignantly reflects, “We are so fortunate. Not a day goes by that we don’t think he’s a miracle.” The story of the Berlin family reinforces the critical need for awareness, early detection, and legislative support for congenital heart diseases—issues that can shape lives and families profoundly.