Bloomington, Indiana – February 1, 2016 — February is the month to celebrate love and hearts. Since 1964, February has been known as American Heart Month throughout the United States. For the Hall family of Cumming, Georgia, February truly is a month to celebrate hearts, and selfless gifts from the heart. Three-year-old Mallory is alive, growing and able to celebrate Valentine’s Day this year because of the new heart she received just over a year ago.
Mallory Kate Hall was born on April 24, 2012, to her parents, Dustin and Jessica. With toddler Madison at home, the couple was excited to leave the hospital and start living their ‘new normal.’ However, that journey took a much different course when Baby Mallory was only 10 days old and contracted an unknown virus that attacked her tiny heart. The virus led to a condition known as dilated cardiomyopathy that causes the heart muscles to become larger than normal but weaker as well. For almost two weeks Mallory was on Extracorporeal Membrane Oxygenation (ECMO), which is a procedure that uses a machine to take over the work of the heart.
Eventually Mallory was taken off ECMO and she limped along with medication. After six long weeks, Mallory was able to leave the hospital. Her heart was severely enlarged and its function was very weak. The Hall family was able to keep Mallory at home for just over two years, but to do so their ‘normal’ included many medications and numerous doctor visits. By the summer of 2014, it was apparent her heart had grown much larger than normal — in fact it was as large as an adult heart but Mallory weighed only 20 pounds. She was losing weight at a dangerous rate because her appetite had decreased and she was vomiting regularly. These were all signs that her heart failure was worsening.
On September 5, 2014, Mallory was listed as status 1B for a heart transplant. The hope was Mallory could continue to live at home until the family received the call that a perfect, new heart had been found. However, her condition worsened before that call came and she had to be admitted to the Children’s Hospital of Atlanta at Egleston on October 6th. Reality hit hard when Jessica and Dustin realized they would live as an inpatient family until a new heart was available. Not knowing how long Mallory’s inpatient waiting time would be or how high the expenses would grow, Jessica and Dustin decided to reach out for help and placed a call to the Children’s Organ Transplant Association (COTA).
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist arrived in Cumming in mid-October to meet with a group of the Hall family’s friends and work colleagues. While this team of dedicated volunteers started working to organize COTA fundraisers, Jessica and Dustin decided to blog about their family’s journey. Jessica posted, “We have been going through a lot of emotions over the past week — anger, acceptance, sadness, fear, excitement — and I would say we experienced each one of these emotions daily and sometimes hourly. I do not know when that will stop, or if it ever will.”
The inpatient months proved challenging for the Hall family. Dustin and Jessica split their time between home with daughter, Madison, and the hospital with Mallory. Jessica’s mom stayed with Mallory once a week so they could be home with Madison, but aside from that one night, the family was split. As the inpatient days grew longer, Jessica posted, “When we first started our journey 33 days ago, the outpouring of support was and continues to be unbelievable. So many people have been asking how they can help and if we are planning any fundraising. One of our best friends, Brittany, has graciously offered to head this up as our COTA Community Coordinator. At this point, Dustin and I are going to focus completely on taking care of Mallory and our family.”
Dustin blogged, “Mallory’s hospital schedule splits our time. It separates a Husband and a Wife. A Father and Daughter. A Mother and Daughter. And most important to me and Jess the amazing, inseparable bond between Madison and Mallory. It also separates a person from their work. Dogs from owners. Immediate family and immediate needs. It is fractured from every angle.”
Thanksgiving week 2014 was very tough on the family. Jessica described it as ‘hitting rock bottom.’ The family was apart and it started to feel like Christmas was going to be spent this way as well. Jessica and Dustin were tired and emotionally drained. Then it happened … the phone rang at 2:00 am on Sunday, December 7th. Dustin and Jessica told Mallory, who was wide awake, her doctors had found the perfect, pink heart just like she had requested. By 8:00 am, Mallory was on her way to surgery. At 5:00 pm they were allowed to see Mallory, and according to Jessica, she looked amazing. She was pink and her breathing seemed normal. Even with numerous IVs and a breathing tube … she finally looked healthy to her emotion-ridden parents.
According to Jessica, “Mallory has always beaten the odds — ALWAYS. Her breathing tube came out at 5:00 am. When we saw her the next morning, she was herself and it was amazing. She was only in the ICU for a few days. She was moved to step down, and she wanted so badly to get out of bed. Her physical therapists got her up and she walked all the way down the hallway. Three days before this she had a heart transplant and now she was walking down the hall. The next day on December 12th, five days post-transplant, we were discharged and Mallory came home with her brand new heart!”
“When we pulled into our neighborhood, people lined the street cheering for her. Every mailbox (almost 200) had a pink heart balloon, and there was a huge banner in our front yard welcoming Mallory home. It was the most amazing moment. We were home just in time for Mallory to walk down the street and meet the school bus — the look on Madison’s face was perfect — and we were together again.”
The COTA in honor of Mallory H team of volunteers exceeded the goal in a matter of months. The outpouring of support was also overwhelming to Jessica and Dustin. They said, “COTA gave us hope that our daughter would be able to have a fulfilled life after transplant without having to worry about how we would be able to financially care for her. COTA provided many resources that helped our community campaign team exceed our goal, and we will forever be grateful.”
This Valentine’s Day, Mallory will be eating her favorite foods and doing her favorite things, which will undoubtedly include playing with her big sister, Madison. Jessica and Dustin will be remembering their daughter’s heart donor angel with love.
For more information about the Children’s Organ Transplant Association,or to find a COTA family in your area, please email gro.a1490856310toc@m1490856310ik1490856310.