By Kiara Doyal, The Seattle Medium
August is National Multi-ethnic Donor Awareness Month. Recognized for the first time in 1998, this national observance was initiated as a single day to increase our nation’s consciousness of the need for more organ and tissue donors from multicultural backgrounds. In 2020, the observance was expanded to encompass the entire month of August to honor communities of color who have been organ and tissue donors, while simultaneously empowering multicultural communities to register as donors.
According to Donate Life America, a nonprofit organization that increases the number of donated organs, eyes, and tissue available to save & heal lives, more than 100,000 people are waiting for life-saving organ transplants, and 60% of those people come from multicultural communities, 27% being Black people.
Although organs are not matched according to ethnicity, and people of different races frequently match one another, individuals waiting for a transplant have a better chance of receiving an organ if there are large numbers of donors from their ethnic background because compatible blood types and tissue markers are more likely to be found among members of the same ethnicity.
Gabriel and Melissa Mwamba from Spokane, know first-hand the difficulty in finding organ donor matches among people of color, particularly as it relates to children.
The Mwambas had their first child, Ruby Josephine Mwamba, in September 2018. Shortly after the birth of their daughter, Melissa learned that Ruby would soon be fighting a challenging diagnosis.
Despite the yellow tint to her skin, the Mwamba family believed their daughter was born healthy with no concerning health issues. However, after an extended hospital stay of multiple weeks, the medical team decided exploratory surgery would need to be performed to find out what Ruby was fighting.
On November 21st, doctors opened her tiny abdomen and discovered she had Biliary Atresia (BA), a rare disease that causes damage to the liver’s bile ducts, and on that same day, Ruby underwent her first abdominal surgery, to remove the damaged bile ducts and her gallbladder.
According to Mwamba, both she and her husband were hopeful that this procedure would be effective and cure Ruby’s issues.
Things went great for two years after the procedure, until Ruby’s condition suddenly took a turn for the worse, until the Mwambas had discovered that Ruby’s skin had turned yellow overnight.
After being treated for several days as a patient who was fighting a suspected infection, doctors determined that Ruby was not fighting an infection. It turns out that her liver was failing, and she was then sent to Seattle Children’s Hospital to be evaluated for a liver transplant.
At the time of her first assessment, Ruby did not appear to be sick and was able to live a somewhat normal three-year-old life and return to Spokane.
On June 1, 2021, Ruby was officially placed on the transplant waiting list for a new liver, but she was listed with a low Pediatric End-stage Liver Disease (PELD) score. The PELD score has been used to allocate livers for transplant in children since February 27, 2002, when the Organ Procurement and Transplantation Network (OPTN) adopted a prioritization algorithm based on the risk of 90-day pretransplant death (death without receiving a transplant).
After being placed on the transplant list, the Mwamba family contacted the Children’s Organ Transplant Association (COTA) for help. COTA, a nonprofit that supports children needing life-saving transplants, welcomed Ruby as an official COTA kid, while she waited for her liver transplant.
“We could get the call at any time, and this would mean our family would need to immediately move to Seattle for a while and stop our day-to-day lives to help Ruby medically adjust to a new organ,” says Mwamba. “This is a scary position to be in, but we are trusting God with all of her, and our needs. And that is also why we have decided to partner with COTA to raise funds in honor of Ruby. It is a nonprofit organization where 100% of funds raised in her honor will assist with a lifetime of transplant-related expenses.”
On November 21, 2021, the COTA for Ruby Strong volunteers decided to launch the fundraising effort for Ruby on Facebook to coincide with the anniversary of Ruby’s first abdominal surgery.
As Ruby’s condition worsened and it seemed a living liver donor wouldn’t be found, the transplant team moved her higher up on the list. After more than 300 days of waiting, Mwamba received a life-changing call from Seattle Children’s, that a matching liver had been found for her daughter.
“It was exhilarating,” says Mwamba. “My mind was not even comprehending what they were saying. Our wait was over. Excited and nervous, we made the four-hour trip the next day to Seattle, to prepare for Ruby’s surgery.”
On April 23, 2022, Ruby endured an eight-hour liver transplant at Seattle Children’s. The surgery was a success, and Ruby’s recovery went according to plan. A few months later, Mwamba shared that Ruby was healthy and pain-free, thanks to the financial and medical support from COTA.
“Once we started working with COTA, we felt instant relief,” says Mwamba. “Before Ruby was even transplanted, COTA worked with our volunteers and offered lots of advice and assistance about how to successfully fundraise. It was something that our family did not have to stress about, which was a blessing. COTA allowed us to focus on Ruby as we waited for her perfect liver.”
“Financial insecurity is one of the most daunting stressors in life,” added Mwamba. “Adding a major organ transplant for a child adds additional stress. COTA has made it easier for us to breathe. We literally do not have to worry about the financial aspects of keeping our daughter healthy which include prescription medications, regular medical testing, and frequent lab work all of which add up very quickly when your child is post-transplant.”