Newborn Screening Family Stories:
Greta was born during a record-breaking, 6.4-inch April snow storm. I had an uncomplicated pregnancy, with regular level three ultrasounds that indicated no concerns. After an amazingly fast and smooth delivery, Greta entered the world making her voice heard. My obstetrician joked that he had never heard a baby start "talking" that early. Greta was beautiful, with an Apgar score of 9. She immediately nursed well, was easily comforted, and was strong and healthy.
Ready to go home, the nurse started the discharge paperwork and informed us that there was one final test they needed to do on Greta: a pulse oximetry screening. Sleeping in my arms, the painless light sensor on her finger indicated Greta's oxygen levels were lower than they should be. The pediatrician told us Greta needed an echocardiogram to see what was going on. Fear started to creep into my chest; I just wanted to go home. A few hours later, I became intensely grateful that Greta did not pass the pulse oximetry screening.
We learned that Greta had a critical congenital heart defect called Total Anomalous Pulmonary Venous Return (TAPVR). Her four pulmonary veins came together and then went up a vertical vein into her right atrium instead of going to her left atrium as they should. She also had a small Atrial Septal Defect (ASD)—a small hole between her two atriums—which was allowing some oxygenated blood to pass through and was keeping her alive.
I was confused and asked the cardiologist, "Why had this defect not been picked on my level three ultrasounds?!" I learned that this was EXACTLY why the pulse oximetry newborn screen is done—to catch those congenital heart defects that would otherwise "slip through the cracks."
At eight days old, Greta had a very successful open heart surgery. The strength, peace, and resiliency Greta had still astounds me, earning her the name "Greta Great Heart." At two years old Greta has no limitations, talks continuously, loves to sing and dance, and is fearless on a playground.
Greta's story would be very different if she had not had the pulse oximetry screen as part of her routine care in the hospital. She would have gotten very ill very fast and had significant complications that could have cost her her life. I have immense gratitude for the advocates, doctors, researchers, and legislatures who standardized the pulse oximetry screening that has allowed Greta to thrive. This simple screen most likely saved her life. For that, I could not have more gratitude in my heart.
-Karin and Steve