ANDREW SAWYER

April 20, 1985 - Pulmonary Atresia

I was born on this day with a congenital heart condition known as pulmonary atresia. The moment I came off the oxygen from my mom, my body became a blueish-gray color. Known also as ‘blue baby syndrome,’ my pulmonary valve did not develop. It was like a gate closed shut, stopping all oxygen from moving to my lungs. A hole in the upper chambers called atrial septum defect (or ASD), allowed the blood to mix which allowed blood flow. There are numerous congenital heart defects. Pulmonary atresia is similar to a more common condition called Tetrology of Fallot, which is a complex defect requiring surgery to fix. At one-day-old, I was flown on a helicopter to Egleston Hospital in Atlanta where I would have my first of three operations in 36 hours.

May 3, 1985 - Operations # 1 - 3

After diagnosis by pediatric cardiologist, Dr. Jane Todd, I was moved to surgery. Since a baby's heart is only the size of a walnut, no homograph type heart valve would fit this size. The life-saving procedure was developed in 1944 by Dr. Alfred Blalock, Dr. Vivien Thomas, and Dr. Helen Tausigg to use a shunt (BTT shunt) to move blood from the subclavian artery to the pulonary artery. This palliated the condition allowing a short-term fix.

At Egleston Children's Hospital, Dr. Willis H. Williams conducted this operation when I was 13 days old. As with many heart operations, there were complications. The first shunt Dr. Williams inserted clotted. He operated a second time with a shunt from a different manufacturer. After this operation, this shunt also clotted and failed. My grandmother, Juanita Sawyer, told me that Dr. Williams called in his emergency surgery crew to operate a third time. He used a larger shunt which would be for a 3-month-old baby. My dad remembers when the very exhausted Dr. Williams greeted them in the waiting room. His words were very calm:

“That's the largest shunt I have every put in a baby. If this one doesn't work, there's nothing else we can do.”

March, 1986 - Operation #4

In the 1960s, a more corrective repair was developed by a New York heart surgeon named Dr. Jim Malm. But the 60s and 70s would still be wrought with high surgical mortality, especially from lack of post-operative care. Many congenital heart defects restricted the right side of the heart. The BTT shunt buys time for a repair called RIGHT VENTRICULAR-OUTFLOW TRACT RECONSTRUCTION. In this surgery, the conduit of the pulmonary artery was cut open and a patch placed across the top. There was still no heart valve, but blood could flow through this conduit to my lungs.

The operation was a major success, but unfortunately, myself and an eight-year-old girl suffered staph infection inside the incision. Dr. Williams once again went to work. He cut the incision down to my waste and removed the entire ab muscles on my right side. He placed the muscles under the incision to draw blood to the infection. He told my parents,

"I've only done this about 14 times. I've never done it to a baby."

It was successful as you will see the tape down low on my abdomen. Once again, I went home. But the detrimental effects of this heart condition reared itself, as the eight-year-old girl did not make it. She had a twin sister, and my parents talked to her parents in the waiting room.

I would celebrate my first birthday at Egleston Hospital with my family. My paternal family is on the left side of the picture, and my maternal family is on the right.

1987 - 1992 - Early Childhood

My brother and sister were born in 1987. We had a normal childhood. I was allowed to do all that my heart would allow me to do.

1989

In August of 1991, my cousins and I went to Sea World. That Christmas, my grandmother sent a donation to Egleston in the name of Dr. Williams. She included a letter to him about how I was doing. He wrote a letter back to her that I keep in my files today.

1994 - 1996 - Cub Scouts & Baseball

After four open-heart operations, I would enjoy my childhood in Cub Scouts and baseball. I would stay in Cub Scouts all the way through Boy Scouts of America in High School. I played baseball until I was in middle school. I was very good at hitting and fielding. I mostly played second base and right field. I hit very well with good hand-eye-coordination. I still have the car and the 2nd place trophy from this derby in Cub Scouts.

October 24, 1996 - Operation #5

The 1990s will be the first time heart valves implanted inside hearts of patients like me would be sought after over the shunt repair. This occurred even with no scientific data. The doctors only saw that if you replace a Tetrology or pulmonary atresia patient with a heart valve, the right ventricle shrinks by 30%. There was still nothing known of the outcome.

At age 11, it was time for me to receive a pulmonary heart valve. The valve would be a tissue valve from a deceased person, called a homograph. I will remember this operation. In 6th grade, I was mostly quiet and reserved, but my faith was strong. Dr. Kirk Kanter would perform the reconstructive surgery at Egleston Children's Hospital. He would first implant a pulmonary homograph, he would then re-construct the failing tricuspid valve, he would sew up a small hole still present in the heart and finally, put back together my separated sternum in 1986.

We only have few pictures from this operation, but there is alot I remember. I remember being pushed in the hospital bed down the many hallways of Egleston to the OR. I remember the large operating room and the very hard table I was laid on. I remember the mask placed on my face followed byt a nurse saying, “Count backwards from 10.” I remember waking up inside a cocoon with something deep in my throat, unable to move, talk or communicate but being fully aware. I remember the thirst in my mouth in ICU, having to stand up, and the chest tubes that felt like daggers. I moved to a room after two days of ICU. My family was with me watching my favorite baseball team, the Atlanta Braves, play in the World Series against the New York Yankees. My grandfather pointing at the screen after Andruw Jones hit his now famous home run in Yankee Stadium, and interestingly, I could hardly care less.

2000 - 2003 - High School Years

The 1980s would mark the surgeries to fully repair the most severe of these conditions. The 2000s would mark the first time that ADULTS with CHD outnumbered CHILDREN with CHD. Talking with Dr. Todd, my family learned that there were only a few people with similar conditions older than me. The few are about a half generation older. In some ways, my generation would write the books on heart valves and multiple surgeries. How far would we go?

I would continue in school marching in the band, becoming drum major in 2002. I would also continue with Boy Scouts finishing Eagle Scout in 2004. These years were uneventful for my heart. The valve was predicted to go 8 - 10 years, but it would last much longer.

Uncle Joel, Grandaddy, Daddy, Myself, Poppy, & Uncle Jerry at Eagle Scout ceremony in 2004

2005 - 2007 - Redcoat Band

The homograph carried me through college, first Abraham Baldwin Agricultural College in Tifton following by UGA in Athens. I got to experience a small dream of playing in the UGA Redcoat Band. Georgia had a great three seasons when I played. The practices, games and travel was very long. I held up, walking as much around campus as possible.

2006

I would turn 21 in 2006 and visited my pediatric cardiologist for the last time. My mom took this picture of me with the lady who saw me off the helicopter in 1985, Dr. Todd, for my last visit. There were no signs of series regurgitation from the implanted pulmonary valve. The valve would continue to be monitored as I moved to the newly developed Adult Congenital Heart Clinic at Emory.

January 19, 2010 - Operation #6

At age 25, I visited my professor at UGA and told him I would miss a semester for having open-heart surgery. He was shocked, but I acted as if it were normal. People with these conditions show little signs on the outside. The homograph was getting calcified, blood regurgitating and the right ventricle expanding under the pressure. The further expansion of the right ventricular results in irreversible heart failure if not fixed.

The goal of this operation was only to replace the homograph. With evidence of a new Contegra bovine (cow) valve doing well in adults, it was used for my pulmonary replacement. Dr. Brian Kogon, a pediatric heart surgeon at Egleston, operated on me. The valve replacement went well but scar tissue from previous operations was difficult for Dr. Kogon to manage. I was left asleep for 48 hours until the post operative bleeding was under control. Three times Dr. Kogon told my parents that “if he doesn't stop bleeding in 15 minutes, I have to cut him open again.” Right before each 15-minute mark, the bleeding would stop. Dr. Kogon finally went home. I actually remember him sitting down and talking with me in ICU.

Dr. Kogon - “Do you know where you are?”

Me - “Yes, Emory hospital.”

Dr. Kogon - “Do you know what just happened to you?”

Me - “Yes sir. I just had heart surgery.”

Dr. Kogon - “What day is it today?”

Me - “Tuesday, January 19th.”

Dr. Kogon - “Nope… It's Thursday, January 21st. But that's good enough for me.”

Considering the brain fog you experience after surgery, I remember this conversion so well. I also remember him getting up to leave and thinking to myself, “How is it Thursday?” I went back to sleep on morphine and forgot all about it ... until my family told me a month later.

Dr. Brian Kogon assessing the EKG leads after the operation. He told me if it was not for my scar tissue, he could have completed the surgery in 2.5 hours. It took him five hours on me.

In 2011, Emory Health magazine featured my CHD story including the humorous story that my patrol leader at scout camp told a group of scouts that the scar on my chest was from an alligator attack. The rumor spread to the entire camp in two days. No one new my history. I will always be the guy who got attacked by a gator.

June 7, 2014 - Scar Tissue

After graduating college, I began my career with UGA Cooperative Extension Service in 2011. Just two years from my last operation, I served as county agent in Thomas County for the next 6 years. In 2014, Kathryn and I got married. It took significant faith on her part to commit her life to me. Her heart is a very strong heart. We lived in Thomas County where she worked at the library.

Unfortunately, the gradient (or pressure) of blood flow through my heart valve was increasing. There was no calcification. I was very tired. I would fall asleep on the hardwood floor in my work attire. In 2015, Dr. Wendy Book confirmed the scar tissue was impacting the performance of my new valve. Not only this, due to my scar tissue, another chest operation may not be feasible. She said if I can buy some time, there is a new valve technology on the horizon.

October 18, 2016 - Transcatheter Heart Valve

The next year, the FDA initiated a clinical trial for the Edwards Sapien 3 Transcatheter Heart valve. This is the newest, game-changing technology in cardiac science. The valve was already approved for the aortic position. Interventional Cardiologist, Dr. Vasilis Babaliarus, would lead the study for the pulmonic position, thus serving the CHD patients with Tetrology of Fallot, pulmonary atresia and pulmonary stenosis. This valve is from paracardial tissue of a bovine heart. The tissue is hand-sewed inside a cobalt stent. The stents are placed into both femoral arteries into the heart. The valve travels on the catheters to its position and is inflated. When the procedure was over, there was no pain from surgery. It felt like a very large breath of air in my lungs immediately.

Kathryn was pregnant with our first child, Jonathan. We went home a few days later. I was back at work in two weeks. Many people in Thomas County did not know I had this done.

Nurse practitioner, Trish, and I hold a replica of the transcatheter heart valve a few minutes before they took me back.

Dr. Vasilis Babaliarus and Dr. Kim on the day of my procedure in 2016.

December 20, 2021 - FDA Approved

By 2021, Kathryn and I had Jonathan (age 4) and David (age 1). I was in my 10th year of UGA Cooperative Extension, and we moved to Dodge County. I began my current role as the Area Pecan Agent in Southeast Georgia. One day I received a call from Emory telling me that the research for the Edwards Spapien 3 was over and to continue routine care. By this time, my heart appointments were all good news. Dr. Jokhadar and I would talk more about U.S. presidential history than the heart, since the valve was working so well. One night, I found an article online sharing the news of the new transcatheter valve's approval. This would become the path for the next generation of CHD patients with my condition.

April 20, 2025 - 40 - Years of CHD

On this Easter Sunday, I turn 40 and have survived 6 open-heart operations and avoided a 7th thanks to the newest technology in cardiothorasic science. Our newest son, Daniel, will turn one-year-old on May 8th.

I also met my 4th cardiologist, Dr. Joel Hardin. He enjoyed looking over some of the surgeon and doctor notes from the 80s and 90s. I told Dr. Hardin stories of Dr. Todd leaving the appointment to go smoke a cigarette, Dr. Kanter's “garden hose” chest tubes, Dr. Kogon's battle against my scar tissue, the American history books Dr. Jokhadar and I read and Dr. B's new valve. Believe it or not, Dr. Hardin only briefly discussed my recent echocardiogram and EKG conducted by our incredible sonagrapher, Sandra Pernetz! He said the blood through Dr. B's valve was flowing FASTER than it does through a normal heart valve. The only exhaustion I now have is from three young boys.

My Message to the next Generation of CHD Patients

Courage does not always win, but weakness will always lose. If you have the choice of fighting and giving up, why not fight? But first, remember those who came before you. And remember when there was no heart surgery. For them, there was no chance. For me, there was advancement through surgery. And for you, there is advancement through technology. This world is not forever. Remember too, there is purpose in science. And if there is purpose in science, there is purpose in your life.

My Message to the next Generation of CHD Parents

Be tough and not weak. With or without CHD, your child must know right from wrong. They must respect authority. The world will be tougher on your child than you ever will be. Your child will need confidence, to know hard work, and to have integrity. Only you and your child understand their CHD; the world never will. Nonetheless, the world will judge them the same. Their best preparation from you is to have loving parents and a structured home!

Special Thanks

CARDIOLOGISTS

Dr. Joyce Hubbard (1985 - 1989)

Dr. Jane Todd (1990 - 2006)

Dr. Wendy Book / Dr. Michael McConnell (2007 - 2014)

Dr. Maan Jokhadar (2015 - 2023)

Dr. Joel Hardin (2024 - Present)

SURGEONS

Dr. Willis H. Williams (1985, 1986)

Dr. Kirk Kanter (1996)

Dr. Brian Kogon (2010)

Dr. Vasilis Babaliaros (2016)

SONOGRAPHER

Sandra Pernetz (2007 - Present)