Newborn Screening Family Stories:
A few days ago, I found out that the Minnesota Newborn Screening Advisory Committee voted unanimously for all Minnesota hospitals to perform the pulse oximetry test on newborns for critical congenital heart disease (CCHD). This is great news! Fortunately, I gave birth to my baby girl at one of the few hospitals in Minnesota that performed this test before this passed.
Our little Sydney was born on July 19 weighing 8 pounds, 11 ounces. Every doctor and nurse that listened to her lungs and heart said "You have a very healthy baby girl!" At this point, we had no worries. But that all changed in a matter of 24 hours.
The next day, the nurse came in to tell us that they were taking Sydney to perform the testing that happens after 24 hours of life. I didn't know at that point what it all consisted of, but the nurse explained a few of the tests they were going to do. About an hour later, the nurse came back to our room with Sydney and told us that she did not pass the oxygen level testing, and that they would be taking her back down to do the same test two more times. Much to our surprise, Sydney did not pass either of the two tests.
Later that day, they performed an echocardiogram and they took an x-ray of her lungs because her CRP levels were high. The nurse said they had to take Sydney to the Special Care Nursery so they could start her on oxygen. It all happened so fast I didn't have time to really think things through. All I could think of was the worst – my baby is being put on oxygen, something is not right.
Fortunately my sister was there, and because of her connections through the organization she works for, HopeKids, she was able to reach out to a few of the moms who have dealt with this same situation and who also knew more about the testing that was being done. After hearing that only a few hospitals in Minnesota perform this test, Maple Grove being one of them, I realized how blessed we were that Sydney was at this hospital and had the pulse oximetry test done. I learned that thousands of babies have been affected by this test NOT taking place. Heart defects and other issues can be detected by this test, and because it is done so early, precautionary measures can be taken to begin treating any issue found.
Thankfully, her echocardiogram came back showing a healthy heart. They only kept her in the Special Care Nursery for a week until she could hold her own oxygen levels of 95-100 percent for 72 hours.
I hope and pray that this test will be approved and mandated across the United States at ALL hospitals. There is no reason that a simple test such as pulse oximetry cannot be done as a precautionary measure to save many lives!
*Sydney's story was featured in the Association of Public Health Laboratory's publication The Newborn Screening Story: How One Simple Test Changed Lives, Science, and Health in America on pages 40-41. Sydney was also featured in Maple Grove Hospital's 2013 fall magazine on pages 10-11.
Note: Pulse oximetry screening for critical congenital heart disease (CCHD) was added to Minnesota's newborn screening panel in 2013. All Minnesota hospitals are now required to perform this screen.