Jayden's Story

Hi, my name is Jayden Frankfather. I was born October 13, 2009, a healthy, normal baby, or so we thought.  In January 2010, I was diagnosed with RSV, a common virus for infants and kids. Unfortunately, I didn't get better, so I had to go to the doctor.  My doctor was concerned as my oxygen was low, so he admitted me to Covenant Children’s.   I continued to decline overnight and had to be intubated so they moved me to the Pediatric ICU.  After intubation, they did chest X-rays and found I had an enlarged heart. They consulted with cardiology and got an echo. They discovered that I had a congenital heart defect called ALCAPA (Anomalous Left Coronary Artery arising from the Pulmonary Artery). I had an ejection fraction of 25% (a normal ejection fraction is 50-75%) and my heart had already sustained damage, which made it enlarged.      

Because of my RSV pneumonia, they were unable to operate immediately. It was a waiting game. After a couple of days in the PICU, my cardiologist gave my parents a research article that showed patients with RSV pneumonia and a congenital heart defect who undergo surgery have a 50% mortality rate. Therefore, the doctors recommended waiting for my pneumonia to improve before proceeding to surgery. Unfortunately, I developed supra-ventricular tachycardia (SVT) with a heart rate of 220 beats per minute. The doctors were able to treat it with medication, but it happened again and that forced the doctor to take me to surgery urgently January 17, 2010 (Super bowl Sunday). The surgery was long and complicated, lasting 10.5 hours. Although the surgery was a success, this would be the first of 5 open heart surgeries.  I remained intubated and on a ventilator for 7 days. The doctors left my chest open for 24 hours after surgery in case I needed to return to the operating room. The first day in the PICU, I had 11 IV pumps helping to keep me alive. Over the next few days, the medications were weaned and by the end of the week, I was taken off the ventilator.     

I spent the entire month of January 2010 in the PICU. By the end of the month, I was discharged home and had to follow up with Dr. Robinson, the cardiologist, 3 days after discharge. Much to everyone's surprise, Dr. Robinson did an echocardiogram and found a large blood clot in my right atrium. This caused quite a bit of drama, and I had to be readmitted to the PICU for anticoagulation to try to get rid of the blood clot.  I continued to improve and get stronger over the month of February, but the blood clot remained unchanged. I was discharged home once again, but this time my parents had to give me injections in my stomach twice a day (Lovenox, a blood thinner). At first, I would scream and cry every time my parents gave me the injections, which broke their heart. Eventually, after several weeks of injections, I didn't even react.    

Over the next few months, my feeding improved and I grew like a normal, healthy baby. I had frequent follow up appointments and because of the nature of my congenital heart defect, I developed scar tissue on my pulmonary artery. Dr. Robinson kept a close watch on this, with frequent echocardiograms, but the pulmonary artery continued to narrow. This caused pressure to build up on my right ventricle, and the doctors feared this would cause trauma to it. This would further damage my heart.     

I had to have a second surgery to try and open up my pulmonary artery September 14, 2010. During the surgery they also removed the clot. I did well for some time but my pulmonary artery continued to narrow.  The surgeon once again tried to open up my pulmonary artery in March of 2011 for my third open heart surgery. He wanted to salvage my native tissue to ensure it would grow with me.  Unfortunately, when I had a follow up angiogram in August of 2011, the decision was made to have a fourth surgery as my pulmonary artery just couldn’t remain open.      

My fourth open heart surgery was August 22, 2011.  I received an artificial pulmonary valve and a Dacron conduit to replace my pulmonary artery. The surgery went well, and I was brought back to the PICU. My parents were able to sit with me as they got me settled in. The hospitalist overseeing me noticed some bleeding which is expected. Unfortunately, the bleeding continued, and they had to rush me immediately back to the OR. I had a cardiac tamponade. Thankfully the amazing staff intervened in time and saved my life. They had to give me lots of blood products.     

Throughout the next decade, I lived a normal life, with only routine checkups. Ultimately, my heart function returned to normal, and I was able to be a normal kid. I played volleyball, basketball, soccer, dance, gymnastics, went to the beach and even snow skied.     

As expected, my artificial valve became calcified. My pulmonary valve would not open or completely close. In fact, on June 24, 2021, I had to get an angiogram and a valvuloplasty to relieve the pressure in my heart. I was lucky as it bought me 2 years of health before my pressure rose again. In the months leading up to surgery, I competed in volleyball, basketball, track, cross country, and tennis.     

On November 28, 2023, I went back for surgery. 7.5 hours later, I got wheeled out of the operating room, with a new heart valve. I don't remember much of the first 24 hours after surgery, but I do remember wanting water and feeling dehydrated, even though I was already pumped full of IV fluids. I remember my eyes weren't opened even when I tried to open them because I was so exhausted. Once I could open my eyes, I remember going in and out of sleep for days. I woke up every hour to drain my chest tubes and it was extremely painful. I feel like that was the worst pain I have ever endured in my life.  Eventually, I had to get up to walk. I couldn't stand straight due to the tightness in my chest, but if I didn't stand straight, my chest would heal improperly and I would walk with a hunch for the rest of my life. It hurt really bad to stand straight and it took practice, but I managed to fix my posture over time.  I was in the hospital for 3 days after surgery.     

I slept a lot of the time after I got home. I probably was asleep 15 hours a day for about 2 weeks after surgery. Over time, I slept less and less. My sleep schedule was eventually corrected, and I was sleeping 8-10 hours a night again.  I was out of school for a total of 6 weeks post operation. It wasn't very hard to catch up on work because my teachers planned ahead to keep me up to date with work.      

I went back to school January 2024. I was so excited to get back to school and see my friends.  It didn’t take long to get back into the routine. Each day I got stronger and stronger.  I slowly got back into exercising and was even cleared by February to go snow skiing.  By the next school year, my Freshman year of high school, I competed in volleyball, tennis, and track. I placed 3rd at my district high jump meet in track and my teammates and I were district champions.     

To conclude this, I just want to let people know that it is possible to overcome illness and feel "normal" again. It takes time, but it is possible. If you take anything out of this story, let it be this: Don't ever let a disease stop you from doing what you are passionate about. If you really are passionate about it, then there is a way it can be done. Have faith that the Lord will provide for you. In other words, if there's a will, there's a way and God never gives you challenges you can't overcome.