“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?
I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.
Other surgical procedures initially looked successful but over time, evidence proved they were dangerous. For instance, the Waterston shunt that I received in 1980, like the Potts shunt, carried a high risk of pulmonary hypertension. Many of us are survivors of such procedures.
If you grew up seeing a pediatric cardiologist at an educational medical facility, you too may have experienced the “can I listen to your heart?” experience. Lines of medical students would form outside of my examination room, simply to listen to my impressive murmur. It’s strange how you can feel like a superstar and a super freak at the same time.
Now we’re older, and the doctors have learned a lot from our experimental days. Today children with CHD receive some of the best care pediatric cardiology has ever seen, mostly thanks to us, the guinea pigs.
If you are reading this, then you may also be a survivor. Let us not forget the many we’ve lost along the way. It seems confusing at times—why did we survive and they didn’t? There is a bit of survivors’ guilt we carry with us every day. We were spared for some reason. We’ve known of others who lost the same battle—if not personally than via statistics. The reality of how easily we could have been one of those failure statistics chills us to the bone.
That’s what makes being an adult with CHD difficult. As a child, our parents made the tough decisions on whether or not to choose an experimental treatment. Now we have to make the decisions, and if you haven’t had to yet, you know there will be a day in your future when you will.
Take, for example, the “too good to be true” Melody transcatheter pulmonary valve. If you haven’t heard of this thing you need to Google it as soon as you are done reading this. It excites me and terrifies me at the same time. The idea that I wouldn’t need to experience open heart surgery to have my pulmonary valve replacement overwhelms me with happiness, but innately I’m skeptical of the long-term implications of this invention. Is this a prostaglandin-like invention that will revolutionize our surgical approaches, or is this another Waterston shunt that may sound good at first but prove to be a total disaster? I’m praying for prostaglandin-like success.
Some of us have had this procedure already, and to you, I tip my hat. You are braver than me, but then again, I’m not facing pulmonary valve replacement at this moment. But I will someday soon.
We will continue to face new and fancy approaches to our care. It is the nature of our generation, the guinea pig generation (which truly spans many decades).
Thank you to all of us, especially those older than me and those we’ve lost. We’re all in this together, and we’re all responsible for the advancement of our field. We’re saving each other’s lives—even when we are just trying to save our own.
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