More importantly than Valentines Day, today, Febuary 14th, also marks Congenital Heart Defects Awareness Day. On a day we spend considering the matters of the heart, take a few minutes to think about just how much your heart matters.
1 in... 100 babies born, will have some form of a CHD. It comes down to approximately 1 baby every 15 minutes in the United States. This isn't an uncommon problem - it's far TOO common. However, it's not something that anyone expects. No one plans this kind of thing in their life. No one wants to see their baby hooked to machines and monitors. When we imagine our lives, our children's lives, we see them as being bright eyed and vibrant, playful and energetic...the way every child should be, should have the chance to be. However, for 1 in every 100 babies, and their parents, this is not how life plays out. There is a new land, a new world, and frankly - it's scary.
We were the lucky ones. My daughter, Gabby, was diagnosed with heart defects when I was 18 weeks pregnant with her. As terrifying as it was, and as grim as her prognosis was, I KNOW without a doubt, that in getting a diagnosis of heart defects before she was even born, we were incredibly lucky. Far too many babies aren't diagnosed until after birth - until after problems begin. Babies that don't have enough time before they need life saving surgery, who are diagnosed to late. It's not to say that a prenatal diagnosis is a fail proof way to save your child...but when your child's battle is being waged inside their little bitty body, you want any advantage you can gain.
Even if your baby looks healthy prenatally, there is a fabulous, reliable, inexpensive test you should be requesting for your newborn - a pulse ox. Oxygen saturation levels can be GREATLY effected by CHD, and this is a test that takes moments and can save your child's life. Several states have passed laws requiring newborn screening for CHD. Such mandate is under consideration in several other states. Many hospitals are screening babies WITHOUT mandate, simply because it is known to be in the best interest of the babies. Request Pulse Oximetry. Spread the word about it. One baby with CHD that goes home without a diagnosis, is one baby too many.
I thank God EVERY SINGLE DAY for guiding the hands and hearts of Dr. Gary Loffland, and all of the other FABULOUS doctors and nurses we encountered in our time at Children's Mercy Hospital in Kansas City, Missouri. They have saved the lives of my amazing Gabriella twice now, once at 7 weeks when they did surgery for her aortic coarctation, and again 5 days after she turned 3 when they replaced her Mitral Valve. Without them, my beautiful baby girl, would be my beautiful angel. There are not enough words of gratitude in this world for the amazing gift they gave me, and everyone else who knows Gabby - watching her grow up into the inspiring young lady she is becoming. I hope someday I can be half as brave as my 5 year old. She is truly my hero.
I am including a link, to Cora's Story. Cora was a sweet, tiny, beautiful little girl, who was born with CHD. She was diagnosed too late, and is now watching her family from above. Cora's family, has spent over three years now, pushing for CHD awareness and pushing for mandates requiring Pulse Oximetry. Because this test was not done on Miss Cora, she isn't here today. Click Here to Read Cora's Story
Also, the Febuary 14th Project, Every 15 minutes, as put together by Cora's amazing Momma. Every 15 Minutes...
Please, familiarize yourself with the common signs and symptoms of CHD. Watch your child, and push for pulse ox. Spread the word. Maybe someday, no baby will slip through the cracks.