Thanks to Their Daughter’s Heart Transplant
(15 Years Ago on February 15th)
A Texas COTA Family is Celebrating American Heart Month
February 1, 2023 — 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 Stephenson family of San Angelo, Texas, February truly is a month to celebrate selfless gifts from the heart. Their teenager, Reagan, is alive and able to celebrate Valentine’s Day (also recognized as National Donor Day) this year because of the new heart she received 15 years ago on February 15th.
Stacy Stephenson’s fourth pregnancy was seemingly uneventful. Mom Stacy, Dad Rex and their three children … Joshua, Taylor and Nathan … were excited to welcome child #4 to their loving and blessed family.
In May 2007, Reagan came into the world — just a little early at 36 weeks. During the final medical exam before the baby would be leaving the hospital, their doctor heard what he thought might be a heart murmur. He ordered some more tests and decided to keep Baby Reagan in the hospital one more night. Much to everyone’s surprise, the tests revealed something was wrong with the baby’s heart. At just two days old, Reagan was flown from San Angelo, Texas, to Children’s Methodist in San Antonio where Stacy and Rex heard the devastating diagnosis, Dilated Cardiomyopathy. Dilated cardiomyopathy is a disease of the heart muscle where the heart’s ability to pump blood is decreased because the heart’s main pumping chamber, the left ventricle, is enlarged and weakened.
The next few days of little Reagan’s life were complicated and challenging. Her parents were told it was likely the baby had caught a virus in utero, which damaged her heart. But at 10 days old, she was sent home with medication that kept her heart function at 50%. Stacy and Rex were given the following odds about how
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association The Trusted Leader Supporting Families … For a Lifetime
Reagan’s heart would respond to the medication: a 33% chance of improving, a 33% chance of staying the same and a 33% chance of getting worse.
While these were not great odds, Stacy and Rex were grateful to be able to take their new baby home to San Angelo and to step into their new ‘family of six’ reality … which is what they were able to do for nearly three months. In September 2007, Reagan’s team of doctors told Stacy and Rex the baby’s heart function was holding at 50% but also told them it would not improve. In December 2007 at her next medical appointment, Reagan’s heart function had decreased to 35%; her doctors told Rex and Stacy to start preparing for a heart transplant evaluation in Houston.
This was not the news Stacy and Rex wanted to hear, but they had always known it was a very real possibility for Reagan. They decided to focus on the holiday season at home with all four children knowing that the new year might bring some unknown challenges for the family. Unfortunately, on December 20th Reagan went into heart failure and had to be ‘care flighted’ to Texas Children’s Hospital in Houston.
Stacy remembers those very scary moments, “Reagan was sick and throwing up. She was gagging and gasping for air. Her eyes had rolled to the back of her head.” Stacy and Reagan headed to Houston via plane and Rex jumped into his car and drove just over 400 miles to meet them there as soon as possible. On December 21, 2007, their Houston medical team discovered Reagan’s heart was functioning at only 5%. Almost immediately upon their arrival, the team initiated the process of evaluating Reagan for the possibility of placing the baby on the heart transplant waiting list. With the help of an IV drug, milrinone, she was able to regain a little bit of her heart function and was even able to eventually be taken off the ventilator.
Christmas 2007 was spent with Reagan inpatient with Mommy and Daddy and her three siblings all in Houston. While challenging in many ways, the best gift the family received that holiday season came on December 28th
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association The Trusted Leader Supporting Families … For a Lifetime
when Stacy and Rex were told Reagan was being listed for a heart transplant. Reagan and Mom began their wait for ‘the call’ in Houston while Dad returned home to San Angelo, eight hours away, to care for their three children and return to work in an attempt to carry on with life as normally as they possibly could during very tense days.
Then, on Valentine’s Day 2008, Stacy says a miracle happened. She had secretly hoped Reagan’s heart would arrive on February 14th; she honestly admits that she was reaching the end of her rope. She remembers, “I was tired, I missed my family, and it was so very hard living in limbo. I was in tears. I had finally fallen asleep at Reagan’s bedside. The transplant team woke me up letting me know there was a possibility a heart was available for our precious baby. Our prayers had been answered.”
Stacy quickly called Rex. He and their pastor jumped in the car and headed to Houston around midnight. They arrived at 6:30 am and Reagan’s heart transplant surgery began at 7:00 am. Reagan received her perfect new heart, and her second chance at life, on February 15, 2008, at the age of almost nine months. Reagan’s new heart was already beating strong by the end of the complicated transplant procedure. And just 12 days later, Reagan was released from Texas Children’s Hospital. Stacy, Reagan and Reagan’s four-year-old brother, Nathan, were in Houston for three months so the baby could be monitored by her heart team. The two older children stayed in San Angelo with Dad to continue with their schooling. On May 16th, Reagan was released to return home to San Angelo after five months of living away from home.
Reagan’s post-transplant journey with her new heart was relatively uneventful until February 2013 when she was diagnosed with Post Transplant Lymphoproliferative Disorder (PTLD), which is sometimes caused by the anti-rejection medications transplant patients take to keep their transplanted organs healthy. Reagan had to be taken to Houston weekly for the necessary treatment, which worked well and resolved the PTLD by April. In
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association The Trusted Leader Supporting Families … For a Lifetime
November 2014, she was diagnosed with her second bout of PTLD that, once again, required weekly treatments in Houston and again resolved the issue — this time in January 2015. And again, in June 2018, Reagan had to restart weekly treatments in Houston to fight her third bout of PTLD. But this time, it did not resolve the issue until four months later in September. These three treatments prevented full blown lymphoma, which is an answer to prayer for this grateful family. But these transfusion treatments have caused Reagan to have a severe allergic reaction to the drug used in the treatment … which means they have to be performed in Houston at Texas Children’s Hospital where she can be closely monitored.
Another answer to prayer was Stacy learning about the Children’s Organ Transplant Association (COTA) from a COTA family whose son also received a heart transplant at Texas Children’s Hospital. The two families had a mutual connection — the Stephenson’s family’s youth minister’s aunt and uncle were neighbors to this long time COTA family, and he introduced the two. On January 29, 2021, Stacy called COTA to ask questions about the possibility of support and assistance even though Reagan’s transplant had occurred 13 years earlier. She learned that Reagan’s transplant date did not matter because COTA funds can be used for a lifetime of transplant-related expenses. Quite relieved by that answer, the family’s signed agreement arrived just seven days later at COTA’s Indiana headquarters, and the Stephenson family officially became part of the COTA Family.
In late February 2021, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Reagans Journey was launched, and the website was immediately available for online donations for transplant-related expenses.
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association The Trusted Leader Supporting Families … For a Lifetime
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; therefore, 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 a relatively short amount of time, friends and family members utilized COTA’s fundraising resources and raised nearly $40,000 of the team’s $60,000 goal.
“When I returned to teaching school for the first time since Reagan’s birth, our family lost our Medicaid support due to my income,” Stacy explained. “Even with me working full-time, the annual medical costs, deductibles, insurance premiums and medical travel expenses were causing our family to experience a great financial burden. With the help, guidance and support provided by COTA, this burden has been lifted and our income is not being overtaken by ongoing medical needs and transplant-related expenses.”
Reagan and her family continue to make the trip to Houston from San Angelo several times a year for checkups, heart catherizations and biopsies. Recently Stacy posted on the COTA-provided website, “We just wanted to say thank you so much to all who have been able to contribute to COTA in honor of Reagan’s journey. It is Reagan’s annual heart cath and biopsy time of year and we have arrived in Houston. Today, she has completed COVID-19 testing to clear her for her procedures. A heart catholicization is the best way her medical team can check for rejection and make sure the arteries in her heart are not narrowing. This is the largest annual expense of the year for Reagan’s journey costing our family around $5,500 out-of-pocket after insurance coverage is applied.”
In just a few days, Reagan will celebrate her 15th Heart Transplant Anniversary. While seemingly unbelievable for this family, Reagan is living proof of why more people need to register to be organ and tissue donors. All these years later, both Rex and Stacy never forget to stop and remember the family who made the life-saving decision to donate their child’s organs during one of the most difficult times imaginable for any parent. That
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association The Trusted Leader Supporting Families … For a Lifetime
family’s gift of life continues to beat in Reagan’s chest and will be part of the celebration when she turns ‘Sweet 16’ in May.
“COTA has given all of us so much hope … even for the relatively short amount of time that we have been part of the COTA Family,” Stacy said. “While preparing for her annual Houston tests in 2021, we were facing our first out-of-pocket medical bills after losing her Medicaid coverage. We were told our portion of that visit would be more than $5,000. Our amazing COTA volunteers launched the fundraising effort and using COTA’s tools and social media expertise, they successfully raised funds for the COTA for Reagans Journey campaign. Within two months, COTA erased our financial fears,” Stacy said.
Transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatment and monitoring. COTA exists to help families, like the Stephensons, navigate their transplant journeys … for a lifetime.
Regan is enjoying her 10th grade year at San Angelo Central High School. She has her driving permit and is looking forward to getting her driver’s license this summer. This Valentine’s Day, Reagan will likely be doing everything she loves … baking, faithfully participating in the family’s church ministry, competing on her school’s speech and debate team, looking forward to an upcoming theater tech role and starting to think about her collegiate pathway. She is developing a new interest in athletic training due to her work with the San Angelo Central Bobcat football team. Her ultimate career goal? To become a cardiologist.
This Valentine’s Day, Rex and Stacy will be remembering their heart donor angel with love and will be treasuring their COTA volunteers. “We will be forever grateful for COTA’s commitment to helping families like ours,” she added. “COTA holds a very special place in all of our hearts.”
Happy Valentine’s Day and Happy Donor Day Stephenson Family from your COTA Family!
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
Children’s Organ Transplant Association
The Trusted Leader Supporting Families … For a Lifetime
| Observed every year on Valentine’s Day, February 14th, National Donor Day is an observance dedicated to spreading awareness and education about organ, eye, and tissue donation. By educating and sharing the Donate Life message, we can each take small steps every day to help save and heal more lives and honor the donor’s legacy of generosity and compassion. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. |
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.
COTA Teen Reagan Stephenson
Heart Transplant Recipient
2501 West COTA Drive · Bloomington, Indiana 47403 · 800.366.2682 · kim@cota.org · COTA.org
FOR IMMEDIATE RELEASE FOR MORE INFORMATION Kim Carter Parker (kim@cota.org/217.494.6110)
