By Kiara Doyal, The Seattle Medium
August is National Multiethnic Organ and Tissue Donor Awareness Month. This national observance was first established as a single day in 1998 to raise awareness of our nation’s need for more organ and tissue donors from multicultural backgrounds. In 2020, the observance was expanded to include all of August to honor communities of color who have been organ and tissue donors while encouraging multicultural communities to register as donors.
According to Donate Life America, a nonprofit that increases the number of donated organs, eyes and tissues available to save and heal lives, more than 100,000 people are waiting for life-saving organ transplants. Sixty percent of these people come from multicultural communities and 27 percent are Black.
Although organ allocation is not based on ethnicity and people of different races are often matched, individuals waiting for a transplant have a better chance of receiving an organ when there are a large number of donors of their ethnic background because compatible blood types and tissue markers are more likely among members of the same ethnic group.
Gabriel and Melissa Mwamba of Spokane know firsthand how difficult it is to find suitable organ donors among people of color, especially children.
In September 2018, the Mwambas welcomed their first child, Ruby Josephine Mwamba. Shortly after the birth of her daughter, Melissa learned that Ruby would soon face a difficult diagnosis.
Despite the yellowish discoloration of her skin, the Mwamba family believed their daughter was born healthy and without any health problems. However, after a prolonged hospital stay of several weeks, the medical team decided that an exploratory surgery was needed to find out what Ruby was battling.
On November 21, doctors opened up her tiny abdomen and discovered she was suffering from biliary atresia (BA), a rare disease that causes damage to the liver’s bile ducts. 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 hoped that this procedure would be effective and cure Ruby’s problems.
Things went well for two years after the procedure, until Ruby’s condition suddenly worsened when the Mwambas discovered that Ruby’s skin had turned yellow overnight.
After several days of being treated as a patient battling an infection, doctors determined that Ruby was not suffering from an infection. It turned out that her liver was failing, and she was subsequently sent to Seattle Children’s Hospital, where she was evaluated for a liver transplant.
At the time of her initial examination, Ruby did not appear to be ill and was able to live a relatively normal three-year-old life and return to Spokane.
On June 1, 2021, Ruby was officially placed on the waiting list for a new liver transplant, but 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) introduced a prioritization algorithm based on the risk of death 90 days before transplant (death without transplant).
After being placed on the transplant list, the Mwamba family turned to the Children’s Organ Transplant Association (COTA) for help. COTA, a nonprofit organization that supports children in need of life-saving transplants, welcomed Ruby as an official COTA child while she awaited her liver transplant.
“We could get the call at any time, and that would mean our family would have to move to Seattle immediately for a while and interrupt our daily lives to help Ruby medically adjust to a new organ,” Mwamba says. “It’s a scary situation, but we trust God with everything about her and our needs. And that’s why we’ve decided to partner with COTA to raise funds in Ruby’s honor. It’s a nonprofit organization where 100% of the funds raised in her honor help with lifetime transplant costs.”
On November 21, 2021, the volunteers of COTA for Ruby Strong decided to start a fundraiser for Ruby on Facebook to mark the anniversary of Ruby’s first abdominal surgery.
As Ruby’s condition worsened and it seemed that a living liver donor would not be found, the transplant team moved her up the list. After more than 300 days of waiting, Mwamba received a life-changing call from Seattle Children’s that a liver match had been found for her daughter.
“It was exciting,” says Mwamba. “I couldn’t even comprehend what they were saying. Our wait was over. Excited and nervous, we set off the four-hour trip to Seattle the next day to prepare for Ruby’s surgery.”
On April 23, 2022, Ruby underwent an eight-hour liver transplant at Seattle Children’s. The surgery was successful and Ruby’s recovery was on schedule. A few months later, Mwamba shared that Ruby was healthy and pain-free thanks to COTA’s financial and medical support.
“When we started working with COTA, we felt an immediate sense of relief,” says Mwamba. “Even before Ruby’s transplant, COTA worked with our volunteers and offered lots of advice and support on how to successfully fundraise. Our family didn’t have to worry about this, which was a blessing. Thanks to COTA, we were able to focus on Ruby while we waited for her perfect liver.”
“Financial insecurity is one of life’s biggest stressors,” Mwamba added. “Having a major organ transplant for a child adds additional stress. COTA has made it easier for us to breathe easy. We literally don’t have to worry about the financial aspects of keeping our daughter healthy, which include prescription medications, regular medical tests and frequent lab work, all of which add up very quickly when your child has a transplant.”
