December is the month when many focus on gifts. For an Arizona transplant family, December is the month to celebrate the ultimate gift — the gift of life. This family’s beautiful little girl will be celebrating her third birthday and a week later this family of four will celebrate Christmas. Both celebrations are made possible by another family who chose to donate their baby’s heart during the most difficult of circumstances.
The Johnsons’ transplant journey started even before their second child was born. At Mom Brittany’s 24th week prenatal ultrasound appointment, she was told she needed to see a pediatric cardiologist for an echocardiogram. The echocardiogram led to an in utero diagnosis of complete atrioventricular canal defect syndrome, which is a congenital heart defect causing holes in the baby’s heart that would need to be repaired after her birth. Brittany and Dad Matt were heartbroken when they heard the news, but they were encouraged by the pediatric cardiologist’s confidence the surgery would be successful.
Daisy was born in December 2014 and both Brittany and Matt breathed a sigh of relief. However, the baby’s breathing became increasingly labored with each day. At her one month check up the pediatric cardiologist sent the family to the emergency room because Daisy was in congestive heart failure. Daisy was admitted to Phoenix Children’s Hospital and was eventually diagnosed with an unbalanced atrioventricular canal defect. This hospital stay was two months in duration for the family, who also had two-year-old, Zev, to care for as well. During Daisy’s inpatient stay she was treated with medications but her symptoms did not improve and surgery was deemed necessary. At six weeks old, Daisy had her first open heart surgery to repair some of the congenital defects and to have a shunt inserted.
Daisy’s heart team remained optimistic this surgery would give her damaged heart relief so she could grow stronger before undergoing another open heart surgery to further repair defects. However, Brittany describes the weeks following her open heart surgery as ‘rocky’ because the tiny baby continued to need much medication and breathing assistance. Brittany remembers the day when Daisy’s medical team came into the room and told them Baby Daisy needed a heart transplant to survive.
A financial coordinator at Phoenix Children’s sat down with the young couple to talk about the cost of a transplant and then introduced them to the Children’s Organ Transplant Association (COTA). 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 community 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 these COTA funds are available for a patient’s lifetime.
When they first heard about COTA, Brittany and Matt were unsure of the magnitude of expenses they would incur due to Daisy’s transplant, but the financial coordinator encouraged them to research COTA to see the various ways the organization was able to support transplant families.
On February 28, 2015, Daisy was officially listed for a heart transplant and after waiting less than a week, Daisy received her new heart on March 5th. According to Brittany, “I will never forget walking into her recovery room after the transplant and seeing how pink her toes looked for the very first time.” Amazingly, Daisy was released from the hospital just three weeks after her transplant. Brittany and Matt were so excited to finally have their family of four under the same roof.
Once home and watching the various transplant-related bills filling their mailbox, Brittany started to research COTA. She called the 800 number and thoroughly reviewed the content of COTA.org. She and Matt were both interested in moving forward with fundraising so in May, the Johnsons officially became a COTA family. Once they started working with COTA a fundraising goal was set based on the costs associated with Daisy’s heart transplant. In August 2015, a COTA fundraising specialist travelled to Phoenix to meet with a group of family members and friends and walked them through event planning, public relations and promotions and website management.
“COTA has supported us, and our volunteers, so much throughout Daisy’s journey,” said Brittany. “They have been the backbone of our fundraising efforts and are always ready to share their expertise, resources and endless support and encouragement.”
According to Matt, “The way that COTA really helps is by providing us reassurance in the future for transplant-related expenses. The COTA in honor of Daisy J funds are available for her lifetime, which is such a relief to me. No one knows what is going to happen in the future. There could be job changes or layoffs or insurance plan changes … you just never know. COTA gives me a sense of relief that Daisy can continue to receive top-notch medical care no matter what the future might hold.”
The COTA in honor of Daisy J team of volunteers started by promoting the COTA donation link virally to their friends and family members. They also organized a ‘Drive for Donations’ event at a local Phoenix car dealership in which a $10 contribution was made to COTA in honor of Daisy J for every test drive taken during November 2015. Brittany made and sold Daisy’s Blooming Headwraps through the COTA website with all proceeds being used for transplant-related expenses. The team also took advantage of a large grocery store’s charitable donation program that took a percentage of what friends and family members spent and donated it back to COTA in honor of Daisy.
“COTA has been a wonderful partner in helping us organize fundraising activities and giving us hope for the future of Daisy’s medical care,” said Brittany. “Fundraising is a daunting and intimidating task, but COTA gave our volunteers the tools and encouragement they needed and provided tremendous expertise and resources.”
Today Daisy continues to grow stronger. Mom Brittany keeps quite busy taking Daisy to appointments with various medical professionals. Even with her many medical visits, she is a happy little girl who simply does not fuss much. Daisy smiles when someone plays peek-a-boo with her or when her cheeks are kissed. And she adores big brother Zev who is a huge help whenever she does get a little upset. Zev can easily make Daisy laugh.
“We have had a lot of worries as we care for our sweet Daisy,” said Brittany. “But COTA has given us hope by taking away the financial burden of her transplant. We have also gained hope and strength by watching the many other COTA children nationwide who are thriving. It has made us feel like we are not alone.”
COTA encourages its families to keep their kids’ stories updated on the COTA-provided website and on various social media channels. Brittany has updated the Bloom Little Daisy Facebook effort regularly throughout the transplant journey. On the one-year anniversary of Daisy’s new heart, Brittany shared these words:
It’s been a big week for this little lady – yesterday was Daisy’s first heartiversary! For us it was a day overflowing with joy, as we were surrounded by much of our family and many special friends. But as we celebrated our brave little Daisy and the many miracles that have kept her here with us, our hearts and thoughts turned in reverence to the family who is mourning the loss of their little one this time of year. It is only because this family chose to donate life that we get to enjoy each day with Daisy. We pray today and every day that they may be granted some peace as they cope with their tragedy. Our hearts are with them always.
This Christmas will likely be full of celebration and joy for Brittany, Matt, Zev and Daisy as they enjoy the holidays in their Peoria, Arizona, home. Daisy is a gift for this family who went from praying she would live just one more day to now watching their toddler enjoy the sights, sounds and tastes of the holiday season. They will indeed remember their special donor angel this holiday season as well.