I mentioned in an earlier post that there is a test that can be done on newborns called pulse oximetry screening to detect any undiagnosed CHDs. You all know what a pulse oximeter is and many of you have probably had the test done to you at least once in your life. Usually it's a small device with a red light that is clipped to your finger for a few minutes to test your oxygen level in your blood. For babies, they usually use a sticky piece of tape that is attached to the wire with the red light. SIMPLE and EASY and PAINLESS, but can save your childs life.
Just last week, there was a short story about this exact screening and how it could save lives. Click here to watch it!
When Claire was born, her O2 saturations (sats) ranged between 80-90s and would sometimes drop into the 70s. A child without a CHD should have ab out a 99-100 sat. I'm sure you all remember reading about Claire's desats when her O2 sat would drop. The reason Claire had low sats is because she had the large whole between her 2 bottom ventricles where the oxygenated blood mixed with the non-oxygenated blood. This mean that the blood going to Claire's body was "diluted" in a sense. You have all heard of red blood and blue blood. Her red and blue blood mixed between the ventricles and that is not supposed to happen. Plus her pulmonary artery was narrow with an obstruction at the base of it, so it was hard for her blood to be pumped to her lungs.
Once Claire's heart was repaired, her blood was no longer mixing or diluted. Therefore now her O2 sats stay in the 95-100% range.
These tests are cheap and easy. They should be done on EVERY newborn between 24-48 hours after birth while they are still in the hospital. Every pregnant woman out there should know to request this test be done on their newborn before leaving to go home. If we had not had other pregnancy issues that they were looking at, I have a feeling they would have not found Claire's heart defect before she was born. And even though Claire was born with the "Blue Baby" heart defect, she was never blue. So that would not have given it away.
There are lots of children who are not diagnosed in-utero (like Parker and Caden). Some find out as soon as they are born and others don't find out until months or years later when they have problems depending on the severity of the CHD. Some children are not diagnosed until it's too late.
Some states are working on passing laws to make it a mandatory test for newborns to be screened before leaving the hospital. North Carolina does not have a law yet, but I hope it is not too far away.
So please, pass the word along to any pregnant woman you know or anyone who may have children in the future. Ask for a pulse oximetry test for your newborn child before you leave the hospital. It can save your child's life.
You can read more about pulse oximetry screeing for CCHDs at http://www.cdc.gov/ncbddd/pediatricgenetics/CCHDscreening.html.
The Scott Family