My Story

Not long ago was the first time that I sat down and asked detailed questions to my mom about what happened to me as a little kid. As I talk about the details of what happened in 1982 and on, keep in mind that my parents were 26 year old and first time parents.
I was born on October 2, 1982, as a healthy baby weighing in at a whopping 8lbs and 1oz.
My parents had procrastinated a little, like most of us do, on finding a regular pediatrician for me. When I went in for a regular check-up at six weeks, my parents chose a nice, Philippine doctor by the name of Dr. Virgilio Pilapil. He happened to be a pediatric cardiologist. He heard a heart murmur while doing the check-up but said that nothing was wrong and that heart murmurs were very common.
Everything was normal for the next 2 years of my life. I learned to crawl, walk, run and go in the toilet. All the normal stuff you do by two years of age, I had done. There were no symptoms that anything was wrong.
In November I had tagged along with my mom for Gretchen’s, my then two month old sister, check-up with Dr. Pilapil. Dr. Pilapil wanted to listen to my heart while I was there. He heard something that didn’t sound quite right to him. He went ahead and did an EKG and then told my mom that she should take me to the cardiologist at one of the hospitals in Springfield. My mom in the confusion went to the wrong hospital at first.
At the right hospital they did an ultrasound, where they found a hole in my heart.
I had a couple monthly check-ups and then was scheduled to have a catheterization in February. After the catheterization my parents were told that I needed surgery, but that they didn’t know the extent of my problem. The doctors in Springfield made contact with the doctor’s at Chicago Children’s Hospital. I still had no outward physical symptoms. Since I was not considered an emergency, my scheduled surgery was in July. My parents had to wait five agonizing months until there 2 year old would have surgery.
I went in for my monthly check-ups in Springfield, which happened to be a teaching hospital. All the interns liked listening to my heart because it was so unique. They would all ask my parents the same questions. Does he have any bluing of the fingertips or the lips? Is he lackadaisical? Does he run out of breath easily? My parents would answer the same to all these questions. No.
After the 5 painstaking months were over July 7th had arrived. I had to undergo some testing and my parents took two days of classes to prepare them for my surgery. They were told what I would look like and what to generally expect after my surgery. They were given presentations by nurses and doctors and shown a kid recently out of surgery.
When going into surgery the doctors thought I had partial anomalous pulmonary venous return with ASD, but didn’t know the extent. They would find out when they cut me open. I was taken in at 5:30 a.m. They put me on a heart and lung machine. After the first half hour of surgery the my parents were told one pulmonary vein was going in wrong, the next half hour 2, the next half hour 3. I had 3 out of 4 pulmonary veins going in the wrong way with the hole ( Atrial Septal Defect) thankfully draining blood to the other side of my heart. My heart was roughly four times the size it was supposed to be. The surgery took three to four hours. I was taken off of the respirator within minutes of surgery.
After surgery, my mom said that I was a yellowish, greenish color. She said that I looked like a breathing cadaver with bandages and IV’s coming out of both feet and hands and a chest tube. There was me and a baby in this first intensive care room. There were nurses at pretty much all times in this room and I was only allowed to be visited by two people at a time. My burly uncle had to walk out of the room and cry after he saw me.
At the end of these two days my chest tube was removed. Doctors recommended that my parents not be in the room for this. Even though they weren’t in the room, they could still hear me screaming as the tube was ripped out since my skin had already grown to it.
I spent 36 hours in the next room with three other kids. After this I was put in a regular room. The same uncle who had been crying and couldn’t stand to see me mustered up the strength to come back and visit. When he came to the room I wasn’t there. Of course the worst was assumed. I was, however, in the playroom being scolded by the nurses for moving chairs.
I was sent home after five days with just tape on my chest. My parents, on the way home stopped at a McDonalds and I bumped my chest on the booster seat and cried. But I wouldn’t be stopped. I had regular checkups until I was 5. The first time I saw Dr. Pilapil again you would have thought I saw the devil himself, but he wasn’t offended. I was cleared at 5 years old.