The surgery lasted about 12 hours. We got updates by phone an hour at a time. Each hour seemed like an eternity as we sat in the waiting room praying while our daughter Bella miraculously received her new heart.
To my wife Corey and me, our youngest daughter Bella is a miracle. Born early in April 2010, Bella was diagnosed with a “slight” heart murmur. A week later, the heart murmur was still present, so a local pediatric cardiologist sent us to the ICU to undergo several tests. The results revealed that Bella had nine different heart defects, including Hypoplastic Left Heart Syndrome, and Double Outlet Right Ventricle, and was having congestive heart failure. Once stabilized, our family went home with a bag of medicines and a referral to Monroe Carell Jr. Children’s Hospital at Vanderbilt; surgery was the only long-term solution.
A few weeks later, Bella had declined and was in congestive heart failure again. It was time to prepare for surgery. In June 2010, Bella had her first open heart surgery to band her pulmonary artery to control the amount of blood coming from her heart to lungs. A few months later, Bella had a surgery to counteract severe acid reflux and medication side effects, and to place a stomach tube to keep vital nutrients in her system. At 6 months old, Bella had her second open heart surgery, the Glenn Shunt, which disconnected everything returning blood to her heart from the upper part of the body and diverting it to the pulmonary artery. In June 2012, Bella had her third open heart surgery as a 2-year-old, the Fontan surgery, which disconnected everything returning blood to her heart from the lower part of the body and redirected it to the pulmonary artery. After the Fontan surgery, Bella developed Bradycardia, an abnormally slow heart rate, which slowed her heart rate to 24-28 beats per minute. To counteract this, Bella went into a fourth surgery to install a pacemaker.
After the pacemaker was installed, Bella got closer to a “normal” childhood for a few years, but still dealt with catching “normal” illnesses leading to lengthy hospital stays. She also developed Tachycardia, a randomly increased heartrate, which her pacemaker could not slow down. Several times, we rushed her to the hospital with 150-200 BPM, her heart would stop, and a crash cart would shock her back to life. Always the fighter, Bella would just laugh each time she came back to life. She took everything in stride, from flying in medical helicopters to placing IV lines, and has experienced more than most in a lifetime.
In 2018, Bella’s electrophysiologist/cardiologist made Bella a transplant candidate. After extensive preparation, the heart transplant team finally met Bella in 2020. A few months later, an official transplant evaluation approved her placement on “The List.” The average wait time for a heart is 282 days, but we received the call on Feb. 13, 2021, at 5:30 a.m. After an emotional car ride and checking-in, we were told the surgery was scheduled for Valentine’s Day, but the weather created unexpected challenges. Midday on Feb. 14, the transplant surgeon said that the heart was no longer available. When Bella got the news, her response was, “So I got these IVs for nothing!” We decided to use this first experience as a practice run while preparing for the next call.
We got the next call on April 17. Bella’s heart transplant surgery was scheduled for the next day on April 18. Before the surgery, Corey and I went down to the surgical floor, knelt down by her bed before they rolled her away, and I said, “Girlie, are you scared?” She said, “Yes, Daddy!” I responded, “Honey, it’s OK to be scared. Your mom and dad are scared too, but you know what? You can’t be courageous if you don’t have some fear. When the doctors say it’s time to wake up, you come back to us.” She said, “OK,” and they rolled our daughter into surgery.
After 12 long hours with hourly updates, the nurse called at 4 p.m. to say, “We have a heartbeat!” A few hours later, the surgeon told us Bella was in recovery. At 10 p.m., we were finally able to see Bella, and the first thing we noticed was how much better she looked. Her color wasn’t pasty anymore; she was “pink” and had freckles visible for the first time. I asked her if she felt different, and she said her new heart felt great, that everything feels better, and the food tastes different.
Bella was released on May 6 with 18 different prescription medicines and two shots a day for four weeks. We stayed in a medical apartment close to the hospital for a week then a rented house close by for numerous tests, labs and checkups. She has 20-21 medicines to take three times a day and will be reduced to about four medicines a day for the rest of her life. She has been healing with her sister, Abby, by her side every day. After 11 years of struggle, Bella can start leading the life of a “normal” 11-year-old as herself: larger than life, wicked smart, and a great sense of humor. Looking back, my greatest challenge and greatest reward has been being Bella’s dad. I often tell people my greatest accomplishments in life are being a husband, a dad and a U.S. Marine.
Editor’s note: You can follow Bella’s journey on her Facebook page “Team Bella.” A donation site was created by the Children’s Organ Transplant Association to help cover medical expenses, medically-related travel expenses, medicines, co-pays and procedures. All donations are tax deductible and 100% goes directly to Bella. Visit https://cota.org/campaigns/COTAforTeamBellasHeart.
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