On June 10, families of children born with congenital heart disease met with their state legislators and held a press conference to urge passage of the Pulse Ox bill, which would make sure every newborn receives the test before being discharged from the hospital. A pulse oximetry test detects a low level of oxygen in the blood, which could be sign of a congenital heart defect. This week, Gov. Cuomo signed the bill into law. Pictured here on June 10 are, from left, Shannon, Jack and Maggie James; state Sen. Bill Larkin, R-Cornwall-on-Hudson; Assemblywoman Aileen Gunther, D-Forestburgh; RJ, Jacob and Kelsey Thomas of Syracuse; Dr. Harm Velvis; Tim, Jennifer and Aedan Conway of Delmar; Melissa and Colton Berlin of Mayfield.
(Albany, NY – Aug. 8, 2013) Jacob, 15 months old; Jack, 5; Aedan, 22 months old; Colton, 2. These very young men have done something remarkable for people 20 times their age: they have helped pass a law. All were born with a congenital heart defect. Since April, they and their parents have met with their legislators, hosted a press conference, and been interviewed in the media about their efforts to get the Pulse Ox bill passed and signed into law.
Today, Jacob, Jack, Aedan and Colton can once again don their red “American Heart Association Superhero” capes and celebrate the fact that Gov. Cuomo signed the Pulse Ox bill into law.
The Pulse Oximetry test will be given to every newborn before discharge from the hospital. It’s a simple and noninvasive test that measures the level of oxygen in the blood stream. A low level can be an indication of a congenital heart defect, the most common kind of birth defect. Nearly 1 in 100 children is born with a congenital heart defect.
“I am overcome with joy that Governor Cuomo has taken the initiative to sign the Pulse Oximetry bill,” said American Heart Association spokeswoman Kelsey Thomas of Syracuse. “My son Jacob’s life was saved because this screening was performed on him. He could have been discharged from the hospital and become one of many babies who have passed away as a result of their congenital heart defect. It gives me so much pride knowing that something our family has worked so hard for alongside the American Heart Association will now save so many babies’ lives.”
Patti Stone of Congers serves as an American Heart Association spokeswoman because she did lose her child to a congenital heart defect.
“Samantha was born in 2002, seemingly healthy,” Stone said. “Six weeks later, Samantha went into cardiac arrest. Samantha had not had a pulse ox test and we learned she had an undiagnosed congenital heart defect. Her death is a heartbreaking, senseless loss. I’m glad that Governor Cuomo is signing a law so other babies might live the long and healthy lives we thought Samantha would.”
“We were discharged from the hospital with a healthy baby boy,” said American Heart Association spokeswoman Melissa Berlin of Gloversville. “At his well-baby visit one week later, Colton began to turn blue. We were rushed to the emergency room, where we learned that he had a congenital heart defect. He has already had two out of three scheduled open heart surgeries. I am haunted by the thought that this might not have happened in the doctor’s office, and we might not have our lively 2-year-oldwith us today. I’d like to thank Gov. Cuomo for signing this law so that hopefully no other family will ever have this worry.”
“We knew when we were expecting Aedan that he had a heart defect,” Jennifer Corcoran Conway of Delmar, a spokeswoman for the American Heart Association, said. “That knowledge let us take action as soon as Aedan was born. Today, he’s happy and healthy.”
“The sooner we identify a problem, the sooner we can treat it and let these children and their families lead the kinds of lives they imagined they would lead,” said Pediatric Cardiologist Dr. Harm Velvis, a spokesman for the American Heart Association. “Thank you, Governor Cuomo, for seeing the sense and simplicity of conducting a pulse ox test on every newborn.”
The Pulse Ox Bill was sponsored by Assemblywoman Aileen Gunther, D-Forestburgh and Senator Bill Larkin, R-Cornwall-on-Hudson.
The law will take effect in 180 days.