Every year, 100,000 babies don't make it to their first birthday because of CHD.
Lyndsay Donhoff | Heart Warrior of the Week

Our Heart Warrior of the Week is Lyndsay Donhoff!  Her CHD is atrial septal defect (ASD), she was also born with pectus excavatum, more commonly known as sunken or funnel chest.  Lindsay was born on December 29th, 1991, but she wasn’t diagnosed until she was four years old, here she describes her surgeries in her own words:

When I was four years old, I underwent open-heart surgery for an ASD repair and a chest wall sternal reconstruction. The defects themselves are not uncommon, but my case of pectus excavatum was severe.  Before my surgery, I remember being able to fit my entire fist into the large indentation in my chest - four-year-old me thought this was a pretty cool party trick -  but unfortunately, the pectus caused my sternum to press against my heart, preventing it from filling with blood and pumping normally.  This, paired with an ostium secundum atrial septal defect, created enough concern for my surgeon to decide my condition warranted a repair.  Upon operation, the surgical team found my defect to be substantially larger than the echocardiogram tests had indicated.  As stated by my surgeon, the opening in my heart was roughly the size of a U.S. quarter.  Had it been left untreated, the odds of experiencing heart failure in my twenties would have been extremely high.

atrial septal defect

Today, due to CHD research and rapid advancements in surgical technology, while some severe cases like Lyndsay’s are still repaired with open-heart surgery, more and more ASD repairs are being treated with minimally invasive surgeries or robotically-assisted procedures. (Amazing!)

Including surgery and recovery time, Lyndsay spent about two weeks in the hospital.  She remained out of the hospital for heart-related issues until the age of 13 when she began experience episodes of pericarditis – inflammation of the two thin layers of sac-like tissue that surrounds the heart.  She will likely have to take medication to reduce the reoccurrence of the inflammation at periodic intervals for the rest of her life.  Outside occasional bouts with pericarditis, Lyndsay says she is lucky and has enjoyed good health considering her condition, living a full and (mostly) unrestricted life!

When asked if there are any worries or challenges that she faces being a CHD Warrior, Lyndsay said the following:

As soon as I left the hospital after my surgery, my parents worked hard to raise me no differently than they did my sister.  I can’t imagine how difficult it must have been on my parents to face the thought of losing their child, and furthermore going on to raise that child as if nothing out of the ordinary had occurred.  The urge to try to protect me from every painful experience the world had to offer must have been overwhelming, and yet they never faltered. My parents taught my sister and me that with hard work, a bit of courage, and enduring perseverance, we could accomplish just about anything.  I'm deeply grateful for this perspective and I think it has served me incredibly well.  I have found myself to be quite tenacious in achieving my goals; I managed to earn my college degree in three years and found a job that I'm passionate about that challenges me every day.  At the same time, I find myself at a crossroads that I’m sure many CHD Warriors have visited, walking the thin line that separates tenacity and foolishness.

I'll be the first to admit that I have a bit of an invincibility complex.  In my defense, and in the defense of my fellow CHD Warriors, growing up with a sweet 15-inch scar on your chest does have a habit of making you feel like Iron Man.  However, we all learn that we are, in reality, human. Yet I still find myself putting in long hours at work when I have a cold, exercising through an injury, or even taking on large stressful projects when I have too much on my plate.  Where’s our Tony Stark’s suit of armor when we need it, right?  But discomfort and pain are the body's natural signals to indicate that there may be a larger problem at hand.  Rather than ignoring these signals and working through them, I'm trying to get better at interpreting them to take better care of myself.  For anyone with a cardiac history, it's especially important to be in touch with your body and its distress signals to recognize when something is in fact wrong. 

chd support

While reflecting on her journey with CHD and all the obstacles she has met and overcome along the way, Lyndsay says:

I grew up with an insatiable curiosity for life science.  I still remember bringing my childhood anatomy book to my cardiologist visit and asking him to “explain himself.”  He warmly took the time to break down a complex condition into terms which a four-year-old could comprehend; going as far as providing an explanation as to why I wasn't able to watch the procedure.  I should note that my favorite television program at the time was "The Operation" on TLC, and I was quite excited at the prospect of seeing my own surgery.  He assured me that my teddy bear would give me a play by play after my procedure which seemed like a reasonable alternative to me.

With an adult dose of realism and an adult understanding of congenital heart defects, I feel incredibly grateful to be alive and well.  I’m especially grateful for the team of people who helped treat and support me along the way.  As a four-year-old, it's hard to grasp the amount of work and care that's involved in pulling off a successful open-heart surgery.  In my book, the real CHD heroes are the fathers who’ve spent many sleepless nights by our bedsides, the mothers who light up the room with their smiles when we need it the most, the surgeons who let us take out our own stiches, the doctors who invented the phrase “explain it like I’m four,” and organizations like Save the Heartbeat who work tirelessly every day to support the CHD heroes like myself.

About Lyndsay’s CHD

Atrial Septal Defect (ASD)

atrial septal defect

An atrial septal defect is a hole in the wall between the two upper chambers of the heart (atria).  This defect allows the oxygen-rich blood to mix with the oxygen-poor blood within the chambers of the heart, resulting in a lack of oxygen being supplied to the body.  Those with ASD can go weeks, months, or even years without any obvious signs of a problem.  If symptoms do occur, they include shortness of breath, frequent respiratory infections, and difficulty breathing.  Large and long-standing ASD’s can damage your heart and lungs while small defects may never cause a problem at all.  An adult who has had an undetected ASD may have a shortened life span from heart failure or high blood pressure that affects the arteries in the lungs, which is why early detection is so important.  ASD is one of the most common types of congenital heart defects, almost 2000 babies are born with this condition in the U.S. every year.

There are four major types of ASD’s: ostium secundrum, ostium primum, sinus venosus, and coronary sinus.  Lindsay’s ASD, ostium secundrum, is the most common of the four, affecting 70% of those with atrial septal defects.  

 

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