It’s Awareness Day…and??
February 14 is Congenital Heart Defect Awareness Day. It’s also the day our 2 month old almost lost her life on the way to a hospital emergency room. Not a great memory or reason to celebrate. But is is a reason to share, which is what thousands of families are doing on this day.
When Eve was diagnosed at 48 hours old, the doctors said she had unknown “congenital heart defects” and possible pulmonary hypertension of the newborn, resulting in a diagnosis of Congenital Heart Disease. What is “congenital”?? Is that like “congestive” heart failure? Is it a disease? Or a defect? Tip: do not Google “pulmonary hypertension of the newborn” from your hospital bed at 2 AM after they have taken your baby away to the ICU.
She would struggle to make it past one week old. But after she did – through a cocktail of 7 round the clock medications to keep her heart functioning – we started digging into what CHD really meant. Fact: we had no clue. And I had been around heart stuff…serving on advisory committees for the American Heart Association and Children’s HeartLink…and had personal friendships with some of the pioneers in cardiac medical devices. My dad had Rheumatic fever as a child – and had subsequent heart issues. His mother – my grandmother – was a blue baby, and in the 1950s was among the first patients on Dr. Walt Lillehei’s heart lung machine. That surgery extended her still abbreviated life by almost 5 years…long enough to see one of her 4 boys graduate high school.
Still, with all this, I was a complete idiot on CHD. This deer-in-the-headlights response recurs almost daily when we use the term (or the acronym) to explain what happened to our daughter Eve. People just don’t get it. Lumping Critical Congenital Heart Disease (CCHD) in there – and seriously, it’s almost time to throw in the towel.
The simplest way around this so far has been this: Eve was born with heart defects that caused her heart disease – which she will have for the rest of her life.
I think what’s unique to the CHD community is that we are dealing with a BIRTH defect. Explaining that’s what “congenital” means is important, but not required. I think great strides can be made when we start talking about “heart defects” and “heart disease”. People CAN get their heads around that. And they can talk to others about the prevalence, the need for research and the astounding progress that has been made to improve the long-term survival rates.
At 15 and 16 weeks old, Eve would undergo two surgeries to repair her heart defects. Her recovery after was nothing short of miraculous. Today, she is a boisterous 3-year-old with only the remnants of the scars from her open heart surgery. 1in100.org and facebook.com/1in100 began with the purpose of connecting families and impacting health policies that can improve outcomes for pediatric heart patients.
The first priority was early detection of critical heart problems that kill and compromise babies. Heart defects are the leading cause of infant death from birth defects, claiming the lives of more than 4,000 babies in the U.S. each year. Fortunately, a simple, non-invasive test in the newborn nursery can help clinicians detect possible heart problems, ensuring earlier intervention and better outcomes.
It was a two-year crusade. One that reinforced the utter lack of understanding of what CHDs are and how often they occur. One percent of newborns are impacted. The population surviving with congenital heart disease is growing 5 percent each year.
This month, I have the sincere honor of presenting hospital Grand Rounds with Eve’s cardiology team in Minnesota, and will be addressing the topic of newborn screening for heart defects at Cardiology 2012, attending by clinicians and medical experts from around the world. I’m safe with the CHD and CCHD acronyms among these folks. It’s the rest of the world that needs to understand. And if kicking the acronyms to the curb works, then let’s roll with it.