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July 1, 2021 — July is going to be a month of celebration and joy for COTA’s Bean and Featherstone Families of Central Illinois. It was five years ago on July 11th when (then) 16-year-old Hannah Bean suffered sudden cardiac arrest and was rushed to the local hospital. No one in Hannah’s family had any reason to suspect the teenager had been living with a rare disease — until they nearly lost her to cardiac arrest on that fateful day.
Her mother, Liz, remembers the day in May 2000 her sweet Hannah entered this world as a beautiful baby girl. The day the baby was to be discharged to home, her heart rate appeared to be very low. Hannah was kept an extra night for monitoring because no infections or other symptoms were found and then released the next day.
After six months of cardiology care and checkups it was determined Hannah’s heart was functioning properly. Hannah grew up as a very active girl who loved to jump on the trampoline, chase her pets, hang out with her two older sisters and play softball with her friends. Hannah lived life to the fullest each and every day … until right after celebrating her 16th birthday.
Here is how Hannah’s life took an unexpected turn, in her words:
“2016, the year I thought would be just like the movies when thinking about my 16th birthday. After turning 16 in May, the first two months were just what I dreamed about. Then came the day when my world, and my dreams, flipped completely upside down.
July 11th was a day full of singing and dancing because I was attending a summer musical/acting camp that I had been going to since the age of 8. It was tech week for our production and I
came home for the night absolutely exhausted. I really wanted to take a nap but my stepfather asked that I stay awake so we could go out to dinner. Not one of us in the house that afternoon knew that my ‘staying awake’ is the reason I am alive today. Around 6:30 pm my stepfather heard a loud thud from my room. He and my older sister, Erika, rushed in and found me on the floor gasping for air. 911 was called and my stepfather was told to do Hands Only CPR. The Decatur Fire Department arrived, performed CPR and used an AED to restart my heart. I was transported to our local hospital to get my heart stabilized. Then I was airlifted to St. Louis Children’s Hospital.
I spent the next two weeks in the ICU where the cardiology team worked nonstop to try and figure out my extremely rare arrhythmias. On July 22nd, they implanted a defibrillator and a few days later I was finally able to return home, but my life had completely changed in so many ways. My family and I attempted to get our lives back to normal, but I continued to struggle. In March 2017 it was discovered I was in heart failure. More testing was done and the cause was finally discovered — I was diagnosed with a rare form of Muscular Dystrophy called Danon Disease.
The implanted defibrillator paced my heart on many occasions. As fall 2017 approached it was clear I was declining once again. After a grueling week of meetings and tests back in St. Louis, I was officially listed with UNOS (United Network for Organ Sharing) for a heart transplant on September 15, 2017 — just a little over a year from the day I had a cardiac arrest in my bedroom. I was in high school and tried to feel ‘normal’ and do ‘normal high school things,’ but I had a PICC line and carried around medicine that was constantly pumped in my arm. I still attended high school when I could, went to my homecoming dance and spent most of my time doing ‘teenager things.’ But on December 4th I became very ill and had to return to St. Louis to be admitted. My heart arrhythmias were gaining intensity and there were no guarantees what might happen next. My family was terrified for me to go back home more than two hours away, My cardiology team decided I should remain at St. Louis Children’s through the weekend and go home on Monday. But that did not happen because on Saturday, December 9th we got the call there was a healthy new heart waiting to be transplanted in me!”
While extremely worried about Hannah’s heart failure and the sudden turn the family’s life had taken, Mom Liz remembers all of the questions and stress including the issue of what this journey was going to cost long-term even with the good healthcare insurance they were fortunate to have. During the fall months of 2017 when it seemed a heart transplant was Hannah’s best chance at long-term survival, a Transplant Financial Coordinator at St. Louis Children’s Hospital suggested Liz reach out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help ease some of the family’s stress.
Liz called COTA on November 7, 2017, to learn more about COTA as an organization and as a potential avenue of support for the family. She spent time reviewing COTA’s online and printed materials and discussed how they might be able to move forward with the organization that had come so highly recommended. The family completed and submitted the necessary paperwork and in mid-November, Hannah’s family officially became part of the COTA Family.
“When I first heard about COTA I was on medical leave from work and was quite worried about how we would care for Hannah financially,” Liz said. “From my first call to COTA I knew we were going to be able to trust this organization. With COTA being a nonprofit organization, contributions would be tax-deductible to the full extent of the law, the funds would not be considered income for our family, and Hannah would be able to receive COTA’s support and guidance for the rest of her life.”
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime.
A COTA fundraising specialist trained the family’s group of volunteers in Hannah’s hometown. The COTA staff member talked to their neighbors and family members about COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website they would be provided. The team got to work planning fundraisers for COTA in honor of Team Hannah B to help with mounting transplant-related expenses, and the family could solely focus on Hannah, which Liz says was truly a gift.
The best gift of all Hannah’s first Christmas with her new heart was getting to spend it at home. Sixteen days after undergoing a heart transplant, Hannah was at home celebrating with her family.
Liz blogged on the COTA-provided website, “Hannah enjoyed Christmas morning where we all shared lots of happy tears, as well as sad ones for the donor family. I could not get them off my mind. We held a moment of silence that morning for the donor and will continue to do so on holidays in the future. During the winter months that followed Hannah stayed inside a lot due to influenza fears. She returned to high school on a limited basis in January. During the next few months, Hannah picked out a prom dress, attended prom, painted several canvases (her passion), hung out with friends, sang in choir concerts, met Illinois Secretary of State Jesse White and talked to high school students about how organ donation saved her life.”
Hannah graduated Gold Delta from high school on May 19, 2018. She graduated with honors after surviving cardiac arrest, heart failure and a heart transplant. During those days of looking back and reflecting on Hannah’s amazing journey, Liz created a COTA website blog post focusing on some numbers:
“Since July 2016 it is astounding to think about what our child has been through:
1 Life Flight to St. Louis Children’s Hospital
20-plus Car Trips to St. Louis Children’s Hospital
Four hospitalizations with three stays in the ICU
Three PICC lines
One Central Broviac Line
20-plus Cardiology Clinic Visits
15-plus Echocardiograms
30-plus Blood Draws
Seven Cardiac Caths
Three Heart Biopsies
10-plus Chest X-rays
Seven different Physician Specialists
85 Days on the Heart Waiting List
Liz blogged, “These are just a few that come to mind in a relatively short timeframe. Hannah has endured more trials than any teenager should. Yet she never stops. We are hopeful for her future. For so long she fought to survive, and we all had to walk with her through a very dark valley to get to the top of the mountain where we are at today.”
Hannah continues to do great. She just celebrated her 21st birthday and is thriving. She is living on her own and is excited to share she is in a happy relationship and is raising two fur babies. Hannah is currently studying to get her associates degree in art and continues to express her creativity by in a variety of mediums. She still takes multiple medications, but says it is a small price to pay for being able to live happily and healthy.
“It is truly remarkable,” Liz said. “Hannah has a very rare disease that none of us knew about until the day she experienced cardiac arrest five years ago this month. Things happened so quickly. COTA was not just there for us; they were there in a way that was, and is, so kind and supportive. Having COTA on our journey has been a huge relief and has helped us to keep moving forward. Transplant-related expenses are immense — even beyond what insurance pays. As a mother, I have peace of mind knowing COTA’s support and guidance are with Hannah now … and will be for a lifetime.”
