February is Congenital Heart Defect Awareness Month! Not to be confused with Congenital Heart Disease Awareness week, the week before Valentine's Day, of course. Congenital heart defects, or CHDs, are a subset of congenital heart disease. Some would say the two are different as heart disease can be chronic without a visible physical defect. While I have friends whose lives are deeply touched by congenital heart disease, my own reality has been shaped by CHD. More accurately, my brother's life has been, in some ways, defined by having a congenital heart defect.
"Congenital" means present at birth. Heart defects, specifically, occur early in pregnancy when the heart itself is forming. This happens in the first trimester before many women even know they're pregnant. While we don't understand the exact causes of most congenital heart defects, doctors agree that no one can prevent a CHD. Consider this: 100 years ago, a baby born with a CHD would likely not survive their first year. 50 years ago, that same baby would have a slim chance of surviving by sheer dumb medical luck. And 35 years ago, when my brother was born, babies routinely survived CHD - but only through swift medical care and attention.
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When my mom was pregnant with my sister and brother, she didn't have ultrasounds. At the time in the early 1980s ultrasound machines were neither commonplace nor routinely used in pregnancy. My brother was born in October. His immediate APGAR score was very favorable. But a few hours after birth, he started to falter. He was put on oxygen, which was rapidly increased and then maxed out. Finally, the attending physician (a nephrologist, weirdly) ordered his transfer to a high-level NICU and pediatric cardiology hospital. The day after his birth, he was transferred to this renowned children's hospital to address his heart through immediate surgery. My mom signed herself out of the hospital, AMA (against medical advice), and rode three hours to the hospital to join him.
His case was particularly interesting because he had a few conditions to address. For some reason, one of his valves never formed - so his blood couldn't properly pump through his heart and oxygenate his body. Because it had been unable to practice pumping in utero, one of his heart's chambers was underdeveloped. Doctors were challenged to find a way to immediately open the valve while also giving the hypoplastic chamber time to strengthen. The surgery technique they developed was a hodgepodge of other surgeries, specifically tailored to address my brother's unique heart.
Over the first decade of his childhood, my brother had more surgeries. Each one got his heart closer to typical heart anatomy and function. It's easy for me to forget how much he has overcome just to be here. He doesn't seem sick - he's never seemed really "sick" in my memory. When I really consider the complexity of his CHD and how it has changed his life, I'm grateful to those surgeons. And I'm extremely glad my brother was born 35 years ago and not 45 years ago. What a difference ten years make!
On average, moms in the early 1980s did not receive ultrasounds as a matter of course. If the mother had a history of risk, perhaps their doctor could refer them to the nearest ultrasound clinic. Back in the day, few providers even had a machine in their office! In comparison, my own pregnancies have been vigilantly monitored - with thankfully few moments of excitement. I'd guess I probably racked up six or seven ultrasounds during each pregnancy. That's not even counting the twice-weekly non-stress tests!
In fact, when I mentioned to my new OB that my brother had a CHD, he referred me to a pediatric cardiologist for a high-level ultrasound. Rory had a fetal echocardiogram - the whole process took about an hour. While I was worried at the time, it was ultimately reassuring to know whether or not my child had a heart defect. Let that sink in - my mom didn't even have an ultrasound 35 years ago. When I barely uttered the word "heart defect" to my OB, I was immediately on the schedule with the cardiologist. That fetal echocardiogram ultrasound was so powerful; I stared at the interior walls of my daughter's heart when her heart was the size of a walnut.
According to The March Of Dimes, 1% of babies born in the United States have a congenital heart defect. Some of these defects self-repair over time, while others are more serious and require surgery. Chances are you know someone who has survived their own CHD. Let's all take a moment to be grateful we're living in 2019 and not 1919. Knowing my brother's journey with congenital heart defects has helped me appreciate just how far we've come in terms of medical advancements. Surgeries like my brother's helped doctors refine their techniques to develop more elegant and noninvasive procedures today. That was 35 years ago. Just imagine what the next 35 years of medical progress will look like!