January 17

I was born with a congenital heart defect and spent the first month of my life in the hospital. My mom told me that she went home without me and did not feel she just had a baby. I never understood the toll that it may have been for parents, especially my mom. Her only daughter, youngest of five, and she had to leave me at the hospital. I was in/out of the hospital the first couple of years of my life. My mom said once I stopped breathing. But I’m here now to tell this tale.

I have ventricular septal defect. This is a birth defect of the heart where there is a hole in the wall (septum) that separates my left and right ventricles (chambers). A “VSD” allows oxygenated blood to mix with deoxygenated blood, causing increased blood pressure and increased blood flow in the lung arteries. This results in increased work for the heart and lungs.

I remember, even at an early age, visiting numerous cardiologists and hospitals. I couldn’t participate in PE class early on in elementary school. Sitting out and watching my classmates and feeling out of place.

Every year, my mom and I would take the bus south on Kimball to the train station and take the Blue line to UIC stop. There we would walk to the UIC hospital and would spend the entire day going through my tests, my cardiologists listening to my heart, interns and residents coming in and asking to hear “my heart”. Getting my EKG, X-Rays, etc. More medical staff to come in and listen to a heart murmur, to hear my VSD.

If you listen to a heart with a stethoscope, you would hear a normal heart beat. “Bump, bump, bump, bump”.

When you listen to my heart beat, it sounds like, “Woosh, woosh, woosh”.

This seemed like an exciting thing to hear for these interns and residents. Soon, I realized that this was something that I would experienced every time I’m admitted to the hospital, ER or whenever there was an intern or resident present.

So, living with a VSD:

• I lose my breath quickly.
• Usually, if someone else is sick, then I’ll get sick next.
• I have to take antibiotics every time I visit the dentist to get my teeth cleaned.
• Any type of procedure, antibiotics must be administered.
• I have to be cleared by my cardiologist to get any procedure done.
• I was told at an early age I could only have one child, but I beat that and had two sons.

I persevered. I was an athlete (basketball, softball, soccer, floor hockey, cheerleading). I eventually was permitted to participate in PE class. I was able to live a normal life. I did endure various procedures including one when I was in 2nd grade. My mother was never someone that was very transparent. That year, instead of my annual visit, I ended up staying overnight at the hospital at UIC. They gave me a bath and they set up a bed for my mom to stay with me. It was pretty odd, but I didn’t question it. I was only 7 or 8 years old.

The next morning, I received a stack full of cards from my classmates. I had messages of well wishes, speedy recovery, etc. Someone even taped a quarter to one of the cards. Again, I was so confused. Why do I have these cards? Why did they say they were going to pray for me? Am I sick? What am I missing?

That same day, doctors came in to talk to my mom. They shuffled around and then put me on some other bed that moved. They started wheeling me away, and still I had no idea what was going on.

Next thing I know, I’m in an operating room. I wake up in the middle of whatever procedure is going on. I cry for my mom (yes I remember that). I tell them I’m thirsty and they give me a cup with a straw. Then I’m out again. Finally I wake up. They move me from the operating bed to the movable bed. I look over and see blood where I was laying.

“Am I dying? What happened to me? Where’s my mom?”

So, the procedure performed was called an angiogram.

An angiogram is a scan that shows blood flow through arteries or veins, or through the heart, using X-rays, computed tomography angiography (CTA) or magnetic resonance angiography (MRA). The blood vessels appear on the image after a contrast dye is injected into the blood, which lights up on the scan wherever it flows.

Now, if you go through this procedure, it takes only a couple of hours (if that). When I went through with it, it was 1977 (I think), and this procedure took 8 hours. I woke up in the middle of it and that memory is so burned in my mind.

I think I spent another day in the hospital. I had four puncture holes (that’s what I called them) on my upper thigh near the pubic area. I still see those scars. That’s where they put the things that went through my arteries and veins. That’s how I spent my Easter in 1979. Being in the dark about things and still not understanding why I had to go through this. I do now. They had to see how my blood was flowing through my body especially in my heart and lungs. This building still exists at UIC. A few years ago, my husband drove past it while we were heading somewhere. A rush of memories and emotions overcame me and I just couldn’t, couldn’t look without crying and remembering all those visits, tests, doctors and that procedure that I had no idea I was going to get.

I don’t blame my parents for not telling me. They did the best that they could. I’m sure it was hard for them to process too.