Bloomington, Indiana — April 5, 2017 — April is celebrated nationwide as Donate Life Month. Rest assured that Naomi Reeves’ parents (and likely the entire town of Garner, North Carolina) will be promoting organ donor awareness throughout this month as a way to thank the family who donated their baby’s heart — a selfless act that saved Naomi’s life.
Bethany and Jared Reeves learned they were expecting again on their older daughter’s second birthday. According to Bethany the news made Kathryn’s birthday celebration even more special. Throughout her regular prenatal appointments Bethany was told the baby’s heart sounded ‘perfect’ when the Doppler technology was used. Each prenatal ultrasound check was described as ‘great.’ However, Bethany and Jared’s world fell apart when Baby Naomi was born blue — not pink — on March 22, 2016. She was breathing but even with extra oxygen the baby would not perk up. A doctor finally detected a heart murmur and it was decided to do an echocardiogram on newborn Naomi. When the pictures of Naomi’s heart were live-streamed, the doctor told the terrified couple he had never seen anything like this in nearly two decades of practicing medicine.
Bethany and Jared were scared but had little time to really process what they had been told. Twelve hours after she was delivered, Baby Naomi was airlifted to University of North Carolina – Chapel Hill for further monitoring and treatment. Once Jared and Bethany arrived in Chapel Hill they met a pediatric cardiologist who described Naomi’s unique heart as one-of-a-kind. The couple quickly learned that only half of Naomi’s heart had formed during development; she was diagnosed with hypoplastic left heart syndrome.
Naomi’s only chance of survival was a heart transplant. On her 14th day of life, the tiny baby was added to the waiting list and the long waiting game began. Bethany and Jared were at the baby’s bedside as much as was possible but there were jobs to maintain, bills to pay and their toddler daughter who also needed their time and attention. Their home was 60 miles from the transplant center where Naomi would stay until they received ‘the call.’ On April 4, 2016, Bethany called the Children’s Organ Transplant Association (COTA).
The Children’s Organ Transplant Association (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 team of trained community volunteers. The COTA in honor of Team Naomi R volunteers quickly started organizing fundraisers and raising awareness about the family’s financial challenges … and the need for everyone to register to become organ donors.
Naomi was not able to come home to wait for her new heart. She stayed in ICU, battling collapsing lungs and a mystery virus. The baby had surgery to put bands on her pulmonary arteries to keep her lungs from receiving too much blood. She received a stent to combat against scar tissue. During her wait for a new heart, Naomi was eventually transferred into Duke Hospital’s care.
“From the beginning of our relationship with COTA, the entire staff understood our situation. They took the time to ask about Naomi, about her sister and about us,” Bethany remembered. “All of the fundraising for transplant-related expenses has been done through this amazing organization of incredibly caring people. COTA’s staff trained and coached our local team of volunteers, they constantly gave our COTA volunteers ideas for fundraisers and every day … COTA gave us hope.”
Naomi, Bethany and Jared (and a large team of COTA volunteers back home) waited a total of 145 days for the call letting them know a new heart was on its way. During these anxious days of nervous anticipation, Naomi and her family become increasingly fatigued. Jared continued working, Big Sister Kathryn continued at daycare, and Bethany continued to drive an hour to and from Duke six days of the week. Jared and Kathryn would join Bethany on Saturdays.
On the evening of August 14, 2016, Bethany and Jared received The Call so many had been waiting for and praying about. According to Bethany, “The moment felt surreal. We had waited more than four months hoping every time the phone rang it was this call and here it was. We were asked if we would accept the heart and the physician on the other end of the line was not able to finish the question before Jared and I loudly said, YES … YES … anything you need to do … just YES. As we hung up the phone we gave thanks to God, and then burst into tears. It was at that moment it hit us that a family out there somewhere had lost their child and had selflessly decided to give the gift of life.”
Bethany and Jared spent the evening hours with Naomi. Throughout the night, they received updates on their baby’s heart transplant surgery. Around 5:00 am, they were told the donor heart was in place and beating strongly. It was an overwhelming feeling both Bethany and Jared will never forget. A family’s child had died and that child’s heart was alive and beating in Naomi. Because of the donor family’s decision, their baby daughter would live.
When Naomi returned from the transplant surgery, she was a rosy pink for the first time in her life. She made tremendous post-transplant progress, and a month later in mid-September, Bethany and Jared buckled her into her car seat and drove her home.
Since returning home Naomi has had numerous medical ups and downs, which have required numerous trips and tests back at Duke. She takes more than a dozen daily medications to keep her new heart working well. However, these life-maintaining measures are not affordable for most families. COTA continues to be there for the Reeves family, and will be throughout Naomi’s lifetime.
“We are beyond blessed to be guided through our overwhelming transplant-related financial situation by such a dedicated team of COTA staff members,” Bethany said. “Our family owes COTA a giant debt of gratitude. They are irreplaceable in Naomi’s transplant journey. COTA has lessened the financial burden of a heart transplant and multiple hospital stays and big prescription bills, which allows us to focus solely on Naomi’s care.”
Since that cool September day when they first drove Naomi home with her new heart, the Reeves family has considered every day a blessing given to them by Naomi’s donor’s family. Recently, Bethany posted the following note on Naomi’s Heart Journey Facebook page:
Dear Donor Family,
Today is my child’s first birthday. I have thought about you today and about your child, who did not experience a first birthday. I am so sorry. I pray you are finding peace and receiving comfort. Thank you, again, for choosing to donate life through your loss. Your gift is a blessing every day for my child, for me and for everyone in her life.
Please know your child’s heart is well loved and well cared for. Today we bought a heart-shaped balloon so while we were celebrating my child’s first birthday, we could keep your child in our minds and be thankful. More than anything, we are so thankful.
Love,
A Heart Mom
Today Naomi is crawling, clapping, and living life as a very happy little girl. According to Bethany, “Naomi’s donor has made it possible for her to have a future, and COTA allows us to actually look forward to that future. We have so very much for which to be grateful.”
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ donors. Many COTA families are waiting for the life-saving call the Reeves family received seven months ago. Please go to donatelife.net and register to be an organ donor in your state. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives. While 95% of U.S. adults support organ donation, only 54% actually register as donors.
