If you have a CHD baby, whether it’s HLHS or something else, you’re going to become really, REALLY familiar with an Oxygen Saturation monitor, aka O2 Sats, aka Sats, aka Pulse Ox. Oxygen saturation is a measure of how much oxygen the blood is carrying. If you hooked up a healthy adult or child to a sat reader, it will show the oxygen saturation as at or very near 100%. With Hypoplastic Left Heart Syndrome, this will not be the case. When Nolan was in NICU, I didn’t know anything about all the numbers on the monitor he was hooked up to. The nurse told me all about it: blood pressure, heart rate, and oxygen saturation. Sat rates are really important for heart babies, obviously: if they get too low, their breathing gets labored and their color can start to change. I remember in NICU that Nolan’s monitor was set to go off once his sats were below 75. And man did that thing go off…it’s an all-too-familiar sound to heart parents: boong…boong…boong…boong….BING…BING…BING…BING. And then you freak, and maybe the nurses come a little quicker, and typically everything is fine. The sat monitor used to make me nuts until one of Nolan’s doctors finally told me that the sat reader isn’t always an exact science: it may show low sats but that doesn’t always mean low sats: you have to look at his breathing and color. If it’s reading his sats at 60% but he’s breathing normally and his color is good, then it’s ok. Just give it a minute and we’ll see. Sometimes, though, it is very serious.
So here’s another reason why reading sats is important: IT SAVES LIVES. How? It can really catch CHDs in undiagnosed babies before they leave the hospital. Imagine this: not every family finds out their baby has a CHD during the pregnancy phase. That’s terrifying. Even worse, some families never find out their child has a CHD and the baby dies shortly after birth or in one of those terrible sports-related deaths you read about in the paper. That’s even worse. Not every hospital is equipped with a NICU, much less a staff that can adequately handle a CHD. Many kids are transported to hospitals hours away…so we’re lucky to have one of the best right here. Even so, a great way to find out about a potential CHD and work on getting help is through pulse ox screening for EVERY baby. This is a $5 test that takes like 5 minutes. That’s it. The crazy thing is, not every state requires mandatory pulse ox screening for every baby born prior to discharge. That’s changing, though, and it’s AWESOME. Think about how many lives can be saved with mandatory pulse ox screening across the country? I can’t imagine what it would be like to find out just after birth about a CHD, but I think it’s worse to never know and then lose your loved one because of it.
So how does mandatory pulse ox screening become a reality? With you! Go to this site: http://pulseoxadvocacy.com/current-legislation/ and see if your state has passed a pulse ox screening law. If not, you can also find out how to contact your local lawmakers. Be serious about this: contact them. Saving these lives starts with YOU: so show that you care and do it. This law passed in NC and I was thrilled thanks to many heart parents who are fighting for their babies and those who are to come.