Nancy Swanson calls to her son Noah on the playground at his Phoenix preschool. He doesn’t want to leave, he’s too busy playing and having fun, but it’s time to go to a Phoenix hospital for a weekly check in. This visit is part of a regime of visits to monitor Noah’s progress following a cord blood transplant just over a year ago, a procedure that saved his life; a procedure that required a decision by a mother, unknown to the Swanson family, to donate her child’s umbilical cord blood.
What Is a Cord Blood Transplant?
A baby’s umbilical cord blood contains stem cells, immature cells that can grow into many other types of cells. A cord blood transplant uses the stem cells captured from a donated umbilical cord to restore the stem cells when the bone marrow has been destroyed whether by disease, chemotherapy, or radiation. Because stem cells are so versatile they can be used to treat a number of diseases where cells are weakened or diseased and need to be replaced. For more information about how cord blood transplants work check out this link.
When he was still just three years old, Noah needed a little known procedure call a cord blood transplant. Today, a year later and almost five years old, Noah is thriving, Nancy says, “Because a woman chose to donate her baby’s cord blood publically… the most wonderful gift a mother can give to another mother.”
Why Did Noah Need a Cord Blood Transplant?
Noah has a disease called Myelodysplastic Syndrome (MDS) . MDS refers to a group of disorders of the bone marrow, the spongy material inside your bones. The bone marrow is where most of our blood cells are made. People with MDS do not form enough healthy blood cells and the only treatment is bone marrow or cord blood transplant.
Typically, MDS affects men over 65 years old. It is not a disease commonly associated with young children, but Noah was diagnosed as a toddler.
How Was Noah Diagnosed?
At six months old Noah started getting lots of ear infections. “We were always at the pediatricians. They were getting ready to put ear tubes in.” Nancy shares. Then while in California, Noah had afebrile seizure and went to an emergency room.
While Noah was at the hospital, a basic blood panel was taken. At just ten months old, Noah was diagnosed with severe neutropenia. Severe neutropenia means he had extremely low number of neutrophils, a type of white blood cell that helps fight infection. The hospital did a bone marrow biopsy, and then a few months later another, and another, and then a year after the first indications, Noah was diagnosed with MDS and refractory cytopenia of childhood (RCC). The only treatment – a bone marrow or cord blood transplant.
The Search for a Match
Noah was extremely sick, while some individuals with MDS can watch and wait before getting treatment, that wasn’t an option for Noah. Noah needed a transplant, but no one in Noah’s family was a match, not even his young sister Sydney.
Noah was put on the National Marrow Donor Registry (NMDP) and because Noah’s ancestry is predominately Caucasian (the majority of donors are), his family was told there should not be an issue with finding a bone marrow donor, but as time went on there was still no match for Noah. Noah was added to the International Marrow Donor Register in hopes that a wider range of donors might contain the match for Noah.
After one and half years of hoping for a bone marrow match without success, Noah’s doctors suggested that it was time to pursue a cord blood transplant instead. Cord blood does not require a perfect match between donor and recipient unlike bone marrow transplants and a match was found.
Noah received his cord blood stem cell transplant on July 5th, 2013 from an unrelated donor. Noah was released from his Phoenix hospital on September 17th, 2013 — the day before his fourth birthday — to begin his new life.
Why Was It So Hard To Find a Bone Marrow Transplant for Noah?
While Noah has predominately Caucasian ancestry, he also has Choctaw Native American ancestry. The doctors suspect this missing genetic information was what made finding a bone marrow donor for Noah so difficult. Currently, ethnic minorities are severely under-represented on the National ‘Be The Match’ cord blood registry. The lack of representation of the diverse genetic ancestry in the bone marrow and cord blood registries means that people who are critically ill and could be treated with cord blood transplants can not find matches.
By implementing the Arizona Public Cord Blood Donation Program here at TMC for Women, in Tucson, where we have a rich ancestral diversity, the hope is that new mothers may offer the chance for life via public cord blood donation.
Noah just turned five and while he is still undergoing treatment for his graft vs. host disease the treatments are now every other week rather than twice a week. Today, Noah shows no signs of the MDS and his heart, lungs & liver are healthy. While there are still areas of concern, as would be expected with the cord blood transplant, Noah’s immune system is now strong enough that he can begin getting revaccinated, a vital component for a little boy whose immune system could still be easily overwhelmed by a common virus.
For mom, Nancy, the cord blood transplant is the ultimate gift that they’ve been given for Noah.
“It’s the most wonderful gift a mother can give to another mother.”