Kati and Charles Anderson met in high school and got married just before going to college. They graduated in 2006 and had their daughter, Scarlet, on April 10, 2007.
Young and healthy, Kati and Charles were caught off-guard when their daughter was born small for a full-term baby.
“Scarlet struggled to gain weight,” Kati says. “She had a cough from infancy and developed breathing problems. And she wasn’t nursing. My doctor said Scarlet was just a lazy eater.”
Kati was frustrated, tired, and worried. Her doctor told her to see a lactation specialist, which she did reluctantly, having seen one before. Fortunately, the lactation specialist noticed what Kati had been telling her doctor about all along. The specialist called the doctor and a series of events quickly changed the course of Scarlet’s life.
An X-ray revealed poor lung function in Scarlet that was thought to be pneumonia. Admitted to the hospital, the doctors ran blood tests and learned that baby Scarlet had almost no lymphocytes – a type of white blood cell – that helps fight infections. She was only six weeks old.
“The doctors didn’t tell us what she had, but Scarlet and I were taken to Seattle Children’s in an ambulance right then and there. Charles drove our car over to meet us and we all got there about 9:30 at night. We were very scared.”
Diagnosis: Severe Combined Immune Deficiency Syndrome
It was at Seattle Children’s that the doctors told the Andersons that their daughter had SCID, Severe Combined Immune Deficiency Syndrome. SCID is a primary immune deficiency in which babies fall ill with serious infections within the first few months of their lives, many even life-threatening, including pneumonia, meningitis, or bloodstream infections.
It was determined over the next week that the best course of action to treat Scarlet’s disease was a bone-marrow transplant.
Preparing for Transplant
“We were scheduled for a transplant in August 2007, but then Scarlet got CMV,” Kati says.
CMV (Cytomegalovirus) is a common virus that infects most people at some time during their lives but rarely causes obvious illness. A member of the herpes virus family, which can cause chickenpox, infectious mononucleosis, fever blisters (herpes I), and genital herpes (herpes II), CMV infection can become dormant for a while and may reactivate at a later time. Those who develop symptoms may experience fever, swollen glands, and feel tired. People with a compromised immune system may have a more serious illness that involves fever, pneumonia, and other symptoms.
Scarlet’s doctors wanted to find a donor who was CMV-positive with the idea that it would boost her immune system against this virus in the future.
At six months of age, on September 18, 2007, Scarlet received her bone-marrow transplant from a donor in Germany. She remained in the hospital for approximately a month and lived for the next couple of months at the Ronald McDonald House next to Seattle Children’s until she and her family could return home.
“We are so grateful to SCCA and Seattle Children’s,” Kati says. “They really care about you there. They know who we are and they care… you can tell by the look in their eyes.”