Bedford family grateful for heart transplant that saved son's life
December is the month when many focus on gifts. For one Bedford transplant family, December is the month to celebrate the ultimate gift — the gift of life. The Austin family is stepping into December thinking about a very special Thanksgiving seven years ago spent inpatient when they received that most special gift. This year, their now 11-year-old can enjoy the sights and sounds of the holiday season thanks to receiving a new heart … and a second chance at life.
In 2010, Ashley and Chris Austin were thrilled to find out they were pregnant with their second child, according to a press release. Their oldest son, Grady, was excited to meet his new sister or brother. Cohen arrived in July 2011. Even though Ashley and Chris were unaware at the time, Cohen was born with Restrictive Cardiomyopathy and Arthrogryposis Freeman-Sheldon Syndrome … two diseases caused by extremely rare genetic mutations. Their firstborn son did not have either of these diagnoses.
The first several years of Cohen’s life were somewhat normal. Ashley remembers the first signs of distress occurring on April 27, 2014, when Cohen was blue for two days in a row. They took their toddler to the pediatrician and were told Cohen’s oxygen level was so low it could not be picked up by the pediatric oxygen machine. The family was rushed to the hospital for further testing and by the afternoon they heard the results.
Cohen’s heart was abnormally large and he needed to be seen by a pediatric cardiologist. Ashley and Chris were in disbelief to hear Cohen had Restrictive Cardiomyopathy. Restrictive Cardiomyopathy is a life-threatening condition that occurs when the heart’s ventricles are too stiff and cannot relax enough to fill with blood. The result is reduced blood flow in the heart that leads to heart failure, arrhythmias, and fluid backups in other vital organs.
Ashley and Chris still remember the terror they felt when the medical team told them their beautiful boy’s only chance of survival would be a heart transplant.
The next day at Riley Hospital for Children in Indianapolis, a heart catheterization was performed, and the family was told Cohen was too sick to be added to the UNOS (United Network for Organ Sharing) list to receive a new heart. Medication therapy needed to begin immediately if there was to be any hope the toddler could one day be listed for a new heart.
On July 1, 2014, while the family was away at church camp, Ashley and Chris received word Cohen had been officially listed for a heart transplant. The family took all the necessary precautions to keep Cohen healthy, which meant they were travelling to Riley every four to six weeks to check his progress while waiting for the next steps.
During this period of waiting, Chris was an Associate Pastor of the Mt. Pleasant Church in Bedford, Indiana. While constantly praying about Cohen’s new heart and worrying about how he and Ashley were ever going to be able to pay for all the bills (not to mention the transplant itself), a church friend talked to them about fundraising for transplant-related expenses.
He specifically suggested they reach out to the Children’s Organ Transplant Association (COTA), headquartered in Bloomington. The acronym rang a bell because a Riley transplant social worker had also suggested Chris and Ashley reach out to COTA to learn more about the transplant-related expenses they were facing now … and would be facing for Cohen’s lifetime. On Aug.13, 2015, Ashley and Chris called COTA and instantly felt many prayers had been answered.
COTA received the family’s paperwork the next day on Aug. 14 and the Austin family officially became part of the COTA family. The Children’s Organ Transplant Association 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 of transplant-related expenses.
In October, a COTA fundraising specialist travelled to the family’s church to train their team of amazing volunteers. The COTA staff member discussed COTA’s fundraising process and shared information about fundraising templates, fundraising guidance, and the no-cost website the volunteers and family would be given for fundraising and sharing the family’s story. This group of church friends and family members quickly got to work organizing fundraisers for COTA in honor of Cohen to help with transplant-related expenses.
A month later on Nov. 24, 2015, Ashley and Chris got the call that a perfect heart had been found for Cohen. They rushed to Riley Children’s Hospital. Cohen was immediately prepped for surgery, but they ended up waiting for hours for the transplant to begin because the heart was coming from Texas. Cohen’s new heart was off bypass and beating on its own in his chest on Nov. 25, 2015 — the day before Thanksgiving that year. Cohen was in the ICU for six days and was then moved to the step-down cardio unit for seven days. After 13 days, he was released from Riley and the family lived at the Ronald McDonald House across the street for several more weeks.
Cohen was given the green light to return home to Bedford just in time to celebrate his fourth Christmas. Cohen remained in isolation, quarantined from everyone outside of the Austin family home, until April 2016. At his six-month transplant anniversary, he was allowed to go back to church and play with friends. Today, Cohen is 11 years old, and his life is full of wonder, blessings, and many answered prayers.
According to Ashley, Cohen went from taking 27 medications given six times a day to six medications given twice daily. Since receiving his new heart, Cohen has been living an incredible life including travelling the country … exploring the mountains of Idaho and Utah … running on the beach in Florida … welcoming a baby sister … swimming with his friends … racing his siblings on their bikes … camping and hiking … eating pizza and ice cream … and drinking his daily Vitamin Zero Water.
“Cohen’s transplant journey has been the most difficult thing I have encountered as a mother, but it has taught our family to trust God and have hope in humanity,” Ashley said. A lot of the hope the family has been able to embrace is due to the amazing team of volunteers who worked tirelessly to make sure a sick little boy received a new heart and a second chance at life. Ashley recently shared these words of gratitude for this special holiday season.
"COTA has been a tremendous support to our entire family during Cohen’s transplant journey. When we first heard about COTA through a friend, we thought it was too good to be true. Why would there be an organization out there that helps support a family emotionally and financially during a transplant journey when they do not even know who you are? After meeting with the team at COTA we immediately realized it is because even in this dark and scary world there are people who truly care about others and want to spread hope and light to those in need. I believe there is not a person or family in this country who can take on the financial responsibilities associated with a life-saving (heart) transplant.
"When you add up the cost of gas, food, and lodging expenses, supplemental medication and devices that are needed (and many times insurance does not cover) … and then add in everything else that you do not know to even think about … COTA steps in and their support is a priceless gift. When we have had to face these ‘unknowns’ during our son’s transplant journey, COTA has been there to provide financial support AND emotional support by being kind, loving, and genuinely caring each time we call the 800 number to speak to someone about the challenge at hand.
"I remember the time Cohen’s monthly medication was mailed to the wrong address and the purity of the temperature sensitive medication was jeopardized. Our insurance would not cover a replacement, so COTA called our pharmacy and made sure Cohen did not miss one dose of his life-saving medication. I remember when we had to go without health insurance during a job change a few years ago. COTA funds covered the cost of medications for a month until our new insurance kicked in and was active. In each of these types of circumstances (and there have been many others), when we would call COTA and explain the challenge or hurdle, they first listened and sympathized with us always making sure to provide very necessary emotional support first before addressing the details and the next steps for resolution. Every single person at COTA is a problem solver for transplant families. They are fixers with really big hearts."
This holiday season, the Austin family will be celebrating and worshiping. They have just completed a service project that Cohen gets to pick each year to honor the family in Texas who made the selfless decision to donate their child’s heart – a heart that continues to beat in Cohen’s chest today. “We feel that since someone saved Cohen’s life, we need to take time each year during the holidays to give back in some way … to someone … to honor our donor’s family sacrifice and gift,” Ashley said. “Going through a life-threatening experience with Cohen has taught us to value life, to live intentionally and to help others in need whenever we can.”
Ashley continued, “It is impossible to understand, unless you go through it yourself, what it means to see your child dying in your arms one day, not knowing if tonight is the last night they go to bed with breath in their lungs. Before his transplant, Cohen had no joy, no hope, no goals … and he never once talked about what he wanted to do when he grew up. After receiving the best gift, a new heart, it was like a switch went off inside of Cohen. He started talking about dreams, goals and his aspirations to be a Superhero.”
Today, 11-year-old Superhero Cohen is a boy on the go. He loves Legos, Chicago Cubs baseball, Chicago Bears football, Chicago Bulls basketball, raising baby chicks and sheep. Cohen aspires to be a sheep farmer when he gets older. This season the Austin family will celebrate the gifts of the season, especially the gift of life Cohen received and the gift of a happy, healthy family — gifts they will treasure for years to come.
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
This article originally appeared on The Times-Mail: Bedford family grateful for heart transplant that saved son's life
