“This toolkit is an outstanding product that is the end result of much consideration and research, and will provide a straightforward, easy-to-use method to screen for cyanotic and serious forms of congenital heart disease in newborns. This program allows for a reliable, low-cost, high-throughput early detection program in the nursery setting, reducing the risks of complications from delayed diagnosis. I applaud the organizers and coordinators and hope that newborn pulse oximetry screening will quickly become widely implemented as standard-of-care.”
Charles I. Berul, MD
Chief, Division of Cardiology
Children's National Medical Center
"New parents have so many things to worry about. What a relief it must be to know that the Children's National Medical Center has now developed a terrific process to screen newborns for congenital heart disease. The Congenital Heart Disease Screening Program Toolkit is a great asset to parents and to our local health providers in Maryland, allowing us to identify and diagnose congenital heart disease earlier than ever before. This outstanding new tool will save the lives of many infants and allow thousands of parents to sleep better. Congratulations to Children's National; they are an outstanding asset to our state and a powerful advocate for children's health."
Delegate Tom Hucker
District 20, Montgomery County
“I commend the Children’s National Medical Center for producing an invaluable resource that will help save lives and improve detection of congenital heart disease. More than 35,000 children are born each year in the United States with this condition. The Congenital Heart Disease Screening Program Toolkit will assist providers in our community and across the nation to effectively screen for and diagnose congenital heart disease in newborns.”
Congressman Chris Van Hollen
Maryland’s 8th District
“Our son Matteo was born with undiagnosed transposition of the great arteries, and the problem was not detected at the hospital using standard procedures after birth. We had Matteo at home with us for six days before he became ill and had to be rushed to the emergency room, where we experienced the worst moments of our lives as he fought to survive, and the medical team worked to figure out what was wrong and save him. We are convinced that conducting a pulse oximetry screening after birth could have detected the problem and led to further tests and immediate care without the trauma that he experienced. Thanks to the tremendous care Matteo received after becoming ill – from the ER to the OR – he is now a happy, healthy, and growing boy. We are lucky to have had such a positive outcome, and we hope that standardizing this non-invasive screening will help prevent other families and their newborns from experiencing similar trauma, with uncertain outcomes. We wish it had been in place for Matteo.”
Marisa Vargas, Andreas Hipple, Matteo and big brother Sebastian
“Detecting critical heart defects in newborn infants can be challenging for care providers. I find this program to be valuable as it provides an increased degree of confidence that newborns with critical congenital heart disease are detected within the first two days of life, improving outcomes for these patients and their families.”
Sandra Cuzzi, MD
Pediatric Education Director, Holy Cross Hospital
Associate Residency Program Director, Children's National Medical Center
“It is so gratifying to have the ability to offer a screening tool to families that helps to provide the rapid and low- risk identification of infants with CHD. Pulse oximetry revolutionized the care we have been able to provide our sickest newborns and it is rewarding to see it take its next step forward in increasing the quality of care we can provide. I feel honored to be able to be part of the effort in using pulse oximetry to improve outcomes for newborns with congenital heart disease.”
Sue Ellin Grier Clarke, BSN, RNC
Nursery Resource Nurse
Holy Cross Hospital
"Pulse oximetry screening for critical congenital heart disease will save lives. I would do anything to go back in time and have this simple test performed on my daughter. She might be with us today."
advocate and mother of Veronica Easley who passed away at 7 weeks old from critical congenital heart disease.
Less than a month after Amani’s second birthday, he had surgery at Children’s National to correct a serious congenital heart defect. The condition, which caused un- oxygenated blood to flow directly back to the body instead of to the lungs for oxygenation, may have gone undetected if he had not received a pulse oximetry screening as a part of the Congenital Heart Disease Screening Program. Amani’s was the first and most serious congenital heart defect diagnosed as a result of the program. His condition did not require surgery right away, but after he had time to grow.Even though the two-year wait was sometimes torture for Amani’s parents, they were comforted knowing his heart defect was detected early and that he would receiveappropriate care and monitoring in the meantime. “The diagnosis was difficult to hear,but the screening helped us avoid the pain of not knowing the root cause of the problem,” said Amani’s father, Zeggai.
When his parents asked him how he felt just a day after surgery, they were surprised when Amani answered, “I’m okay!”
“Today he is as active and talkative as a two-year old kid can be,” said Zeggai
The Andemariam Family