I was born with a condition called Single Ventricle Pulmonary Atresia. Basically I have seven different heart defects, and only half of a functioning heart. My blue blood does not flow thru my heart but around it. I have a single ventricle, Trans-position of the great arteries, PFA, PAPVR, Pulmonary Atresia, Tricuspid Atresia, and ASD.
I was born April 12, 2001 at 6:45 pm. My parents did not know that I had any heart defects prior to my birth. I was almost two weeks late and my mom ended up having a c-section. About 2 hours after I was born, I started to turn blue. At this point the doctors assessed me to see what was going on and gave me some special medicine in my belly button to keep my umbilical cord open. My mom and dad were very scared at this point. The doctors decided that I needed to get to Wichita to see a Pediatric Cardiologist.
Wichita sent an ambulance for me that was specially equipped to handle babies. When I arrived in Wichita the cardiologist did an echocardiogram and decided I needed to get to Kansas City to where the cardiac surgeons were. So I was put on a helicopter and flown to Kansas City.
Once we got to Kansas City, they then did lots of tests on me called heart catheters, EKG, and echo cardiograms. They determined that I needed to have a procedure done that was called the Fontan procedure. It would basically make my heart function. This procedure would have to be done in 3 different surgeries as I grew.
At the age of 4 days, my oxygen saturation level dropped way down, and the doctors almost lost me. But I was a fighter and did not give up. At 6 days old, I had my first surgery.
This procedure was called the BT Shunt. They placed a shunt in my heart to reroute my blood. At this time I was told my heart was as tiny as an acorn, which is amazing that a heart so small can be operated on. I was released from the hospital and able to finally go home at 12 days old. I still looked a little blue, but the doctors told my mom and dad that this would be normal until I was done with all my surgeries. It was normal for me to have oxygen saturation levels of 65(Normal is 95-100). I was scheduled to have my next surgery when I was 1 year old.
On July 3rd, 2001, (when I was 3 months old) I began having problems eating and sleeping. My parents took me to the doctor, who sent me on to Wichita for an appointment with my Cardiologist, Dr. Allen. When we got there I was barely functioning. My sats had dropped to 54. The doctor hooked me up to oxygen and did an echocardiogram and then rushed my mom and I on a plane to Kansas City. My dad drove and met us there. That night they tried to take me in for emergency heart catheter to open up my atrial septum. After working on me for about 5 hours, it failed.
They planned surgery for July, 5th, but on July 4th at 7am, the cardiac surgeon and staff were called in to perform an emergency surgery on me. That night my sats dropped into the 30’s and the doctors do not know how I survived. In this surgery they had to enlarge my atrial septum from 2mm to 14mm. From that point on, every time I went back they called me the miracle baby. When the doctor performed this surgery they had to hook me up to a heart lung machine and stop my heart from beating. When they tried to start it up, it had rhythm problems. But they had the last dose available of a medicine that would help fix it, so they gave me that medicine and it worked. I had to stay in the PICU a lot longer this time because they had to leave my chest open because I had too much swelling from my previous surgery. They kept me heavily sedated until they could take me back to close me up. They left it open for 3 days. I was in the PICU for 14 days.
In March of 2002, I had my next surgery. This one was called the Bi-Directional Glen Procedure. They took one of my own arteries to reroute the blue blood. This surgery was a lot harder, because I had to go back to the operating room while I was still awake crying for my mom and dad. The operation went well, and when I woke up my mom and dad were waiting for me. I had an allergic reaction to my pain medication this time. It made me very itching and I was scratching at my face. All of the doctors teased me that I looked like I had been in a car accident and not just had heart surgery because of all the scratches and scabs on my face. They finally had to put special gloves on my hands, so that I couldn’t scratch anymore. I was in hospital for about a week. Once I got out I had to be very careful not to run around too much because of my chest healing.
In August of 2003, I had what was supposed to be my final surgery, the fontan completion. I was pretty scared to go back to the hospital since I was getting older and understanding a lot more. The surgery went well, and we stayed in the hospital for about a week. But I had some complications and had to keep going back. Twice my mom and dad took me by car, and once my mom and I had to fly my plane. I had to go to the doctor every 2 days so the doctors could take a chest x-ray to make sure that my chest wasn’t filling up with too much fluid. I had to wear special bulbs that helped suck the fluid from my chest and my parents had to change those bandages every couple of days. I finally got those out in November (after 2 ½ months).
When I had my last surgery the doctors placed pace maker wires in my chest in case I ever need to have a pacemaker put in. They say sometimes when you have had so many surgeries a pacemaker is eventually needed. Twice I have had to go in and have the wires moved because they were causing me problems and pain.
Right now I am an 13 year old boy that has many limitations, but I just have to make the best of them. I am lucky to be alive! I cannot play contact sports, cannot be forced to run, and cannot play any competitive sports. Extreme heat and cold also are bad for me. But there are other activities that I can do and just had to learn my limitations. I do not think I will have to have any more surgeries, but the procedures they have done are fairly new with the oldest patient probably only in his 40’s.
This year I got to go to Camp Systole. This camp is in Kansas City for other kids with CHD. It was a lot of fun and I look forward to going back next year. It’s nice to know other kids that have heart problems so I know I am not alone. At camp they have cardiac nurses and trained staff to keep an eye on us in case we have any problems. They had many Drs and nurses from Childrens Mercy that took part in camp. Some were even counselers. Kids with heart problems like mine need to make sure they don’t get too exhausted and do not get dehydrated. My cardiologist has told us that it could be really bad for me to get dehydrated.
Sometimes I feel sad that I cannot do things a lot of kids my age can do. I wish I could wrestle, play football, baseball, and so many other sports. But my doctors won’t let me. It is too hard for my heart and a risk that they say I should not take. This has always been very hard for me because I love sports so much especially football! My favorite team is the KC Chiefs, and I am lucky that I get to go to games. Maybe one day I can be a coach. When I grow up I think it would be awesome to be a heart surgeon so that I can save lives like my heart surgeon, Dr. Laughlin, did for me.