A Father Gives His Toddler a Portion of His Liver…
*Photo courtesy of COTA
Best Father’s Day Ever!
June is a month full of family and fun, especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has become a special holiday for the Cole family of Upper Marlboro, Maryland.
But this year it has even greater significance as the family of three will celebrate Father’s Day together, thanks to a life-saving liver transplant from Daddy Brandon to Baby Cairo just 18 months ago.
Cairo Cole was born prematurely at exactly 31 weeks by emergency cesarean section to ecstatic first-time parents, Brandon and Sable. Cairo means ‘Victorious One,’ which is a most fitting name for this amazing little boy who continues to fight and win battles he has faced since the day he was born in November 2019.
At birth, Cairo weighed 2 lbs. 3.8 ounces. He entered the world with bright open eyes and a faint cry. The infant was rushed to the NICU where he would spend the first 45 days of his life with Brandon and Sable always close by.
On January 10, 2020, Cairo became a NICU graduate and the Coles were finally able to be under one roof in their Maryland home. The very next day was the family’s inaugural outing and it was to take Cairo to his first pediatrician appointment. They were told Cairo had both an umbilical and inguinal hernia (common amongst premature males) that would need to be repaired. They scheduled Cairo’s surgery for March, but the COVID-19 pandemic changed those plans by a couple of months.
On May 11, 2020, Cairo was finally able to undergo the hernia repair surgery. At first everything appeared to be normal and the surgery seemed to be a success. But after being discharged to home, Brandon and Sable noticed their baby was bleeding slightly at the incision site. They immediately returned to the hospital’s ER and it was later discovered that Cairo had a Vitamin K deficiency.
They remained inpatient with Cairo for several days while he was monitored and treated. Brandon and Sable were very excited when they were told they could return to their home and truly begin their life with a fully healthy and happy baby. It was the news they had been waiting for almost since the day of Cairo’s birth.
But their joy was short-lived. About a week after being home and under one roof together, they noticed the whites of Cairo’s eyes turning yellow. The rest of May was filled with appointments, blood tests, genetic tests and visits to several different specialists. The medical team was baffled because the baby’s blood tests showed abnormal liver enzymes, but the genetic tests all came back normal. Brandon, Sable and Cairo were then sent for a second opinion. It was during this visit that an ultrasound showed Baby Cairo was suffering with cirrhosis of the liver … there was also a concern a few lesions found on his liver might be cancerous.
Brandon remembered, “It was devastating to hear that our baby boy would need a liver transplant and would need it soon. It was hard to hear and even harder to process. Our hearts were shattered and we had absolutely no idea what to expect.”
On July 11th, Cairo had a liver biopsy to further test the lesions on his liver. Finally good news for this young family — the lesions were benign and cancer treatment was completely removed from the seemingly never-ending medical journey they were travelling. Cairo was inpatient nearly two weeks this time during which the transplant evaluation process was initiated. An NG tube was surgically placed and Cairo started to receive 24-hour formula feeds to help him gain weight and digest his food properly. It was also during this stay Cairo Cole was placed on the national transplant list. It all seemed surreal to Brandon and Sable. Everything happened very quickly; they were spending countless days and nights inpatient with what they now understood was their very sick little boy.
A few days later, they were released to home to wait for ‘the call’ that a new liver had been found. Throughout August, Cairo had to return for weekly blood tests so his waning liver function could be closely monitored. It was also in August 2020 when a transplant social worker at Georgetown Medstar suggested Brandon and Sable reach out to the Children’s Organ Transplant Association (COTA) to see how the organization might be able to help.
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, 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.
On August 21, 2020, Brandon and Sable placed a call to COTA to learn more. COTA received the family’s paperwork on September 18th, and the Cole family officially became part of the COTA Family.
“We reached out to COTA a few weeks after hearing the devastating news that Cairo needed a life-saving liver transplant,” Brandon said. “Within 48 hours we received a call from a Family Service Specialist who was sympathetic and thoroughly explained the organization’s history, how COTA supports transplant families, the fundraising assistance our volunteers would receive and answered every single one of our questions. Then after our paperwork was accepted, COTA’s President Rick Lofgren reached out to personally welcome us to the COTA Family. We both started to feel a small sense of relief from some of the many stressors we were facing.”
Due to COVID-19 restrictions, a COTA fundraising specialist trained the family’s volunteers via telephone. The training call included detailed information about COTA’s fundraising strategies (virtual and face-to-face) and step-by-step guidance for utilizing COTA’s online resources and no-cost website, which the volunteers and family would be given for fundraising and sharing Cairo’s journey. This group of volunteers quickly started raising funds for COTA in honor of Cairo’s Fight to help with mounting transplant-related expenses.
During this time of waiting and ‘what if’s, both Mom and Dad underwent extensive testing to see if either one could be Cairo’s living liver donor. Ultimately they were told Brandon would be a better match and the entire process moved very quickly from that point. Cairo was extremely sick and desperately needed a functioning liver. On September 22, 2020, that is exactly what he received from Brandon. The good news? Both surgeries were successful and given the COVID-19 pandemic, the family was thrilled when Cairo was released to home on October 6th. Truly miraculous in so many ways, according to these grateful parents.
“Looking back, September 22nd was a day full of emotions and a little fear … but we had so much support,” Brandon said. “Thanks to COTA’s quick response time for everything, our volunteer team was able to launch the COTA for Cairo’s Fight fundraising page on transplant day. COTA also helped our volunteers share our transplant journey on various social media platforms, which really helped to get the word out about what we were facing. We received an abundance of love, contributions and well wishes on the COTA for Cairo’s Fight website. Those messages uplifted and sustained us through some challenging post-transplant days.”
Since his liver transplant, Cairo has had very minor hospital stays. In fact, Brandon and Sable are thrilled that the further they get from his transplant date, his appointments are becoming increasingly less frequent. According to his smitten parents, “Cairo is the happiest baby and continues to light each and every room he enters with his amazing smile.”
The family’s COTA volunteers worked steadily using the tools and resources that were provided to update the family’s networks about Cairo’s transplant journey and the lifetime of transplant-related expenses he and his family would be facing. Within a matter of months, these volunteers raised $60,000 of the team’s $75,000 which qualified them to receive a $5,000 Challenge Grant from COTA.
“Throughout all of the ups and downs of Cairo’s transplant journey, we have leaned on each other and on our family and friends,” they said. “Cairo has helped us find strength we did not even know we had. The journey has not been easy, but because of our network of support and thanks to COTA … we can now see the hope that is at the end of this tunnel.”
Today Cairo — the Victorious One — is typically playing hide and seek … giving kisses … banging melodically on his favorite Xylophone … enjoying horsey rides …‘facetiming’ family members … and constantly asking for Mommy and Daddy to read (and re-read) all of his favorite books. He also takes swimming lessons every weekend and is starting his second season of soccer. In essence, he is a typical two-year-old who is now unstoppable.
According to Brandon and Sable, “COTA has been such a blessing for our family throughout Cairo’s liver transplant journey to date; we are so very grateful for all they have done and continue to do. This journey has been filled with emotions, fear and uncertainty. Thanks to COTA, we have not stressed about how the medical bills would get paid now and throughout Cairo’s lifetime. COTA allows us to focus solely on Cairo’s health. We have been able to be there for our little boy emotionally without feeling the weight of the financial burden associated with a life-saving transplant.”
Enjoy Father’s Day, Cole Family!
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email firstname.lastname@example.org .