April is Donate Life Month: New Kidney Means New Life for a Little Boy

April is celebrated nationwide as Donate Life Month. This year marks the 20th anniversary of National Donate Life Month, which was instituted by Donate Life America and its partnering organizations in 2003. It features an entire month of local, regional and national activities to help encourage Americans to register as organ and tissue donors … and to celebrate those who have saved lives through the gift of organ and tissue donation. The first Wednesday of April (April 5, 2023) is designated as Living Donor Day by Donate Life. In addition to these important observances, the third Sunday each April launches National Volunteer Week (April 16-22, 2023) across the country.

Given these national observances, April is going to be a very big month for the George family of Pennsylvania. This month, the entire George family will undoubtedly be promoting donor awareness and Living Donor Day as a way to thank a work colleague who was tested and turned out to be the perfect match for their son’s transplant in 2021. In addition, National Volunteer Week will play a major role in their month-long celebration since Daniel’s living donor was part of a large university community of supporters and volunteers who were raising funds to assist with transplant-related expenses.

This perfect ‘April story’ actually has its first chapter in May 2016 when Mary Beth and Robert George learned they were pregnant with their first child. They were excited but also were understandably a bit nervous since this was their first pregnancy … first delivery … first time dreaming about being parents. At their 20-week ultrasound, Mary Beth and Robert were told something was ‘different’ with the baby. The doctors were not quite sure what it was, but they noticed the baby’s kidneys were measuring larger than normal. After several more ultrasounds their son was diagnosed with hydronephrosis, which is a swelling of a kidney or both kidneys due to a buildup of urine. In their baby’s case, he had Posterior Urethral Valves (PUV). PUV are obstructive membranes or extra tissue that develop in the urethra causing urine to collect and backflow through the ureters and back into the kidneys. The baby’s left kidney had taken the brunt of the backflow and had grown very large with very thin tissue. The right one had been doing most of the work, so it did not grow at the correct rate resulting in thicker tissue and a smaller kidney.

The good news? The pregnancy progressed fairly well; Mom and baby were continuously monitored, and they were able to prepare for the baby’s challenging first days. Daniel Robert George arrived right after Christmas in 2016 -- truly the best gift imaginable for these first-time parents. After they were able to spend a few hours with their newborn, he was taken to the Neonatal Intensive Care Unit (NICU) and within 24 hours had surgery to remove the PUVs. The surgery corrected the back flow, but there had been too much damage to the kidneys. The Georges heard the diagnosis of Chronic Kidney Disease (CKD) while still looking at their precious little gift in utter amazement. Mary Beth says they were told the tiny baby would need to be put on dialysis within his first days of life, but they somehow luckily escaped that.

For Daniel’s first years of life, his Stage IV CKD was managed with a restricted diet, medications, monthly blood work and constant doctors’ appointments … all of this while both Mary Beth and Robert knew their baby would one day need a life-saving kidney transplant. According to Mary Beth, “In the summer of 2020 we learned that Daniel’s kidney function was decreasing, and it was time for us to meet with the kidney transplant team at UPMC Children’s Hospital of Pittsburgh. Over the course of two full days, we met our new team of doctors, nurses, social workers, psychologists, pharmacists and dieticians. It was a little overwhelming at first, but over the next year or so this incredible team of medical professionals cared for us and helped us navigate our journey to transplant.”

It was also during these meetings that Mary Beth and Robert learned there are two different types of organ donors that work for patients in need of a kidney -- deceased donors and living donors. They also learned that prior to seeking a living donor or listing Daniel for a deceased donor’s kidney, he would need surgery to trim his ureters and reimplant them to his bladder to ensure the backflow of urine was decreased. Then Daniel would need to heal from this surgery before a determination could be made regarding the best way to find the little boy a new kidney. They also learned that even with good health insurance, transplants have high price tags ... not just for the transplant itself, but for the myriad of transplant-related expenses that accompany the life-saving measure.

In November 2020, the family’s social worker from UPMC Children’s Hospital informed them of many organizations who help fully insured families pay for the many expenses they would soon be facing with Daniel’s kidney transplant. The one that stood out to the family was the Children’s Organ Transplant Association and they were directed to COTA’s Get Started online link (https://cota.org/get-started/). In early November, Mary Beth completed the online form to learn more about how COTA might be able to help.

Deciding they would initiate the transplant process (including more conversations with COTA) after the holidays, the George family stepped into 2021 with unanticipated news. Mary Beth learned she was pregnant with their second child. While filled with joy, they also feared the infant might be traveling the same journey they were traveling with Daniel. However, in-utero testing showed the infant to be perfectly healthy, which was a tremendous relief. In April 2021, Daniel’s doctors determined his numbers were heading in the wrong direction and told Mary Beth and Robert the transplant process needed to begin very soon.

On April 15, 2021, Mary Beth and Robert completed and sent their signed agreement to COTA’s Indiana headquarters, and the George family officially became part of the COTA Family and Daniel became a COTA Kid.

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.

“The initial telephone call with COTA was with its President and CEO, Rick Lofgren. To be able to have that connection with the leader of the organization, I knew we were in good hands. The following phone calls were extremely helpful. Various staff members told us what to expect financially and helped us prepare for what the next year of our life would look like. It was definitely eye opening,” Mary Beth said. “COTA instructed us to identify our team of volunteers who not only became the people who were in charge of the fundraising efforts, they raised awareness about Daniel’s need for a new kidney and they also became the individuals we relied on heavily to help our family navigate our journey day by day.”

In early May 2021, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19 and 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 Daniel Strong was launched, and the website was immediately available to accept online donations to assist with transplant-related expenses.

Throughout these initial steps in Daniel’s transplant journey, the goal remained the same … to avoid dialysis, if at all possible. By utilizing the online tools provided by COTA and harnessing the power of social media, they started reaching out to their many networks letting friends, family members and complete strangers know they were seeking a living donor. According to Mary Beth, “The response was overwhelming. At one point, our living donor representative told us more than 300 people had signed up to be tested and 90% of them were in the perfect age range … 20-30 years old.”

At this point, Mary Beth was employed as a Strength and Conditioning Coach for the University of Pittsburgh, and several of her colleagues became key volunteers for the COTA in honor of Daniel Strong fundraising effort. The family’s COTA volunteers planned an amazing first fundraiser in late June 2021, a Cornhole Tournament on a beautiful afternoon. The day after the very successful event, Mary Beth posted on the COTA-provided website: “The words ‘thank you’ are just not enough to show our gratitude for all the love and support we received at yesterday’s COTA for Daniel Strong Sunday Cornhole Tournament. It was a beautiful, hot and sunny day that was filled with laughter and even a little competitiveness. Thirty-two teams competed. We are so grateful.” She went on to thank a multitude of event sponsors and attendees and to acknowledge the 30 individuals who signed up at the event to be tested as potential living donors for Daniel due to the creativity and commitment of their COTA volunteers.

In July 2021, Baby Annabella was born. Annabella, as they were told would be the case, was born without any of Daniel’s kidney complications. Both Mary Beth and Robert were indeed able to breathe a little easier once their beautiful and healthy daughter arrived. They settled in to their new ‘family of four’ reality and continued to navigate Daniel’s journey to transplant.

During the fall of 2021, COTA for Daniel Strong volunteers organized another successful fundraiser, a Penny Social, and at this event, another 30 individuals signed up to be tested as potential living donors for Daniel. This event brought everyone together, and once again showed the support of family, friends and the community. Shortly after the event on October 23, 2021, one of Mary Beth’s colleagues, an athletic trainer at the University of Pittsburgh, told her, “I am a match!” Mary Beth remembers feeling shocked, excited and scared … all of the emotions.

Mary Beth posted on the COTA for Daniel Strong website on November 7th: “WE FOUND A MATCH FOR DANIEL! We are grateful. The decision to sign up to be a living donor is not an easy one, but we have been blessed with an abundance of people who put themselves out there. We will always remember this outpouring of love. We know it was not easy for all of you who were tested to undergo two grueling days of tests, bloodwork and meeting with medical professionals.

To Our Donor, our Hero, Molly: You have made the ultimate decision to give a piece of yourself to our little boy. You have given not only that, but a huge piece of your heart to our family and we cannot find the words or actions to thank you. We have so much gratitude for you and this act of love. You will always be a part of the George family!”

Once Daniel’s living donor was found, the process to transplant moved quickly. The George family and living donor Molly were asked to quarantine for several weeks due to the COVID-19 pandemic. Once all testing and quarantining were completed, the kidney transplant was scheduled for December 7, 2021. Their entire family, which included their large University of Pittsburgh community, breathed a collective and careful sigh of relief.

The transplant was successful; Molly recovered quickly. Molly explained, “After learning more about the George family and all that Danny has gone through in his young life, I felt I needed to try and help in whatever way I could. In thinking about the potential of his future years with a functioning kidney, there was no question about my decision to donate. I am excited to watch him grow up.”

While things were definitely looking up for the family with living donor Molly being a perfect match for Daniel, the family experienced another challenge directly related to the pandemic. Mary Beth and Robert were both inpatient with Daniel, but Baby Annabella could not be with them due to COVID-19 inpatient rules at UPMC Children’s Hospital of Pittsburgh. The University of Pittsburgh community, plus family members, stepped up once again. Mary Beth would regularly pump breast milk for Annabella and then various friends and family members would come masked to the hospital entrance and meet Mary Beth to pick up the breast milk and deliver it to Annabella’s caregiver while she and Robert remained inpatient at Daniel’s bedside.

Daniel recovered well and the family was able to return to their home on December 20, 2021 … just in time to celebrate Daniel’s fifth birthday six days later. It was a blessing, and they were thrilled to be a family of four under one roof able to celebrate Christmas and Daniel’s birthday. Their gratitude continued to grow.

“COTA was incredible throughout Daniel’s journey to transplant and then afterwards while we stayed inpatient with him,” they said. “By the time of Daniel’s transplant on December 7th we had both taken off quite a bit of time from our jobs so knowing COTA funds could allow us to take unpaid time off from our jobs gave us huge peace of mind.”

There was an unexpected hiccup at 10 weeks post-transplant that sent Daniel, Mom and Dad back to the hospital following a procedure to remove Daniel’s ureter stent. The day after the procedure Daniel’s face began to swell dramatically. Daniel’s pediatrician sent them to the ER where it was discovered his potassium and creatinine levels were dangerously elevated. Daniel was rushed to the pediatric ICU where he was catheterized and given IV fluids. Daniel remained inpatient for 15 days, which presented more challenges since Mary Beth had already returned to work. She remembers how hard it was to be caring for a baby at home … staying with her little boy in the hospital … and working each day. Thanks to COTA, Robert was able to take unpaid leave and stay home with Daniel to heal until he was cleared to go back to school.

The outcome of Daniel’s hospitalization was the realization that Daniel’s bladder was not contracting fully and was holding urine. Since his release from the hospital in February 2022 and up until today, Daniel must be catheterized every four hours. Neither Mary Beth nor Robert knows what the future holds. But for now, Daniel’s medical catheterization requirement impacts their jobs, their trips, their housing … simply everything. In addition, they have been told Daniel will continue to need kidney transplants throughout the rest of his life since the average transplant kidney lasts about 12 years.

“The Children’s Organ Transplant Association (COTA) has given us space to breathe knowing that the heavy financial burden associated with a life-saving transplant has been lifted off our shoulders,” they said. “Having COTA on our team has been a gamechanger for us. During the time when neither of us could work, our household bills were covered, and we were able to continue to live as normal. There are no words to adequately describe the security we as parents feel knowing that thanks to COTA, Daniel will always be able to receive the care he needs for a lifetime.”

They continued, “The Pitt Community really wrapped their arms around us and supported us from day one. They rallied around us and helped us raise awareness about pediatric chronic kidney disease, kidney transplants and basically found our living donor. They stepped up and took lead volunteer roles in the COTA for Daniel Strong fundraising effort and literally knocked it out of the park. Their generosity will always be part of our family’s transplant journey.” These amazing volunteers and colleagues were also highly successful raising nearly $70,000 to assist with a lifetime of transplant-related expenses.

This April, Daniel will be doing all of the things he loves including playing T-ball and soccer … and cheering for his favorite NHL team the Pittsburgh Penguins. Daniel will be teaching Annabella to build Lego creations and to share his love for dinosaurs. Mary Beth and Robert will be remembering the amazing gift they received from their living donor and their COTA community of volunteers. They also will be treasuring the peace of mind COTA has given them knowing that even when they are no longer here to take care of Daniel, he will be able to receive the medical care he needs. All thanks to COTA.

Nationwide, April is the month dedicated to raising awareness about the need for registered organ and tissue donors. Many COTA families are waiting for life-saving transplants like Daniel received. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 17 people die waiting for an organ transplant here in the United States. Another person is added to the nation’s organ transplant waiting list every nine minutes. One organ donor can save eight lives.