In the United States, 17 people die every day while waiting for an organ transplant, but a single donor can save up to eight lives and improve the lives of more than 75 others.
August is National Multiethnic Donor Awareness Month, an extension of a 1998 initiative to promote awareness and registration of organ and tissue donors from diverse backgrounds.
Although organ allocation is not based on ethnicity, a diverse donor pool increases the chances of finding matching donors based on shared blood types and tissue markers. This month honors communities of color who have donated and encourages more people to register as donors.
The Children’s Organ Transplant Association (COTA) shared the story of the Mwamba family from Spokane, Washington, as a testament to the importance of donor diversity.
Ruby’s story
Born to Gabriel and Melissa in September 2018, Ruby Josephine Mwamba initially appeared healthy, but her yellowish skin suggested a problem beyond jaundice.
After a lengthy hospital stay, doctors diagnosed her with biliary atresia, a rare liver disease, and performed Kasai surgery to treat it on November 21 of the same year. Kasai surgery is a primary treatment for biliary atresia, which involves removing damaged bile ducts and the gallbladder, then connecting a section of the small intestine to the liver to restore bile flow.
“Like most BA families who have the Kasai procedure within the first eight weeks of life, we were confident that this procedure would be effective and cure her problems,” said Ruby’s mother, Melissa.
The Mwamba family was initially happy with Ruby’s stable liver health for more than two years. However, they were alarmed when Ruby suddenly turned yellow overnight. Medical tests revealed no infection, leading to a referral to Seattle Children’s Hospital in April 2021.
There it was discovered that Ruby’s liver was failing and she needed a transplant.
For a liver transplant, the donor must have a compatible blood type and a similar body size to the recipient. Because Ruby has B-positive blood, she could only receive a liver from donors with blood types B or O.
A family member was tested but there was no match, so her father, Gabriel, was tested next, as only one potential liver donor can be screened at a time. The Mwambas were hoping for a living donor – so that both the donor’s liver and Ruby’s would adjust to the right size within a few weeks.
COTA’s support and Ruby’s triumph
On June 1, 2021, Ruby was placed on the waiting list for a liver transplant due to a low PELD score. Children are prioritized based on their risk of death without a transplant.
After making several trips to Seattle to test and monitor Ruby’s liver condition, the Mwamba family was advised by a transplant social worker to contact COTA for help. In the summer of 2021, Ruby required special medications to maintain her liver health while she waited for a suitable donor liver.
COTA, a non-profit charity, facilitates fundraising for families through trained volunteers and covers transplant-related costs. The Mwamba family joined COTA on August 26, 2021, to help ease the financial burden of Ruby’s ongoing care.
As Ruby’s condition worsened, the support of COTA became crucial, helping to raise funds and cover expenses.
A COTA fundraising specialist trained volunteers to support the Mwamba family, who were facing rising transplant expenses. The “COTA for Ruby Strong” team launched their Facebook fundraiser.
As Ruby’s condition worsened and she developed painful wounds and high cholesterol, finding a living donor seemed unlikely. However, the transplant team managed to improve her PELD score, shortening her wait time.
On April 19, 2022, Melissa’s call from Seattle Children’s changed everything: the perfect match for her liver had been found.
“It was exciting,” Melissa recalled as the family prepared for their long-awaited four-hour trip to Seattle the next day.
On April 23, 2022, Ruby underwent a successful eight-hour liver transplant at Seattle Children’s, giving her a second chance at life. Her recovery went smoothly, with only a two-week hospital stay due to an infection caused by her immunocompromised state.
“Financial insecurity is one of life’s biggest stressors,” Melissa said. “Having a major organ transplant for a child adds additional stress. COTA has made it easier for us to breathe. 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.”
Today, Ruby is doing well and enjoying an exciting life with her new brother, Israel Lincoln. She loves dancing, singing, making crafts, helping in the kitchen, reading, playing in the park, and going to church with her family. Ruby is healthy and energetic and is excited to travel to Zambia to meet her father’s family. She is also enjoying her time at preschool.
“Ruby has a lot more energy now and she no longer has the bumps on her hands that used to hurt her so much,” Melissa said. “She is no longer sick and we no longer have to run to the emergency room like we often did before her transplant. Ruby is also sleeping well, has more appetite and is growing!”
This September, Ruby celebrates her sixth birthday.
National Multiethnic Donor Awareness Month is a reminder of the importance of multiethnic donors. Visit RegisterMe.org to register as an organ or tissue donor and save lives. For more information about COTA or to support a COTA family, email [email protected].
