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Mary Pablo's pregnancy had been complicated. But, on May 15, 2005, Madysen Pablo was born. "A few days after Mady was born," Mary says, "I noticed that when she nursed she turned blue!”
Mary and her husband Manny, an emergency room nurse, took her their baby to the emergency room in Oklahoma City where Manny worked. But the doctor there told the Pablos that their daughter was fine.
“Then it happened again,” Mary says, “and again we went to the emergency room. This time they sent Madysen to Oklahoma University Medical Center by Medevac (a nationally recognized air ambulance service with trained medical personnel) because she was cyanotic (a bluish or purplish discoloration—as of skin—due to deficient oxygenation of the blood).”
“I cannot put into words what it was like to have your child flown away, alone without her parents, to the hospital,” Manny says.
Madysen spent the next month in and out of the hospital, which was over an hour’s drive from the U.S. Army base where the Pablos lived.
“Her pediatrician at home kept treating her like nothing was really wrong, but she was sick all the time and wasn't getting better,” Mary says. “We didn’t know that she was immune deficient. And she would just stop breathing! It was horrible. We would actually have to flick her foot every time her monitors went off to bring her back to normal because her oxygen level would continually drop.”
Neighbors were called in frequently to help care for Madysen's two older brothers, Storm and Brock when the Pablos took Madysen to the hospital.
When she was five months old, Madysen was diagnosed with Pneumocystis carinii pneumonia (PCP). “AIDs patients get this,” Mary says, “and we don’t have HIV. That’s when the doctors started talking about bone marrow and we got nervous.” That’s also when the Pablos learned that their daughter had severe combined immune deficiency (SCID) syndrome, that would require a bone-marrow transplant to cure.
Diagnosis: Severe Combined Immune Deficiency
SCID is a primary immune deficiency disease, which leads to serious infections, many even life-threatening, in the first few months of life, including pneumonia, meningitis, and bloodstream infections.
Manny started doing research to find a larger military hospital where he could transfer to and hopefully receive better resources to care for his daughter and more stability for his family. Mary, who ran a bank in the town where they lived, quit her job. The Pablos moved to Tacoma, Washington and Manny went to work at Madigan Army Medical Center.
“Dr. Mary Fairchok, a pediatrician who treats infectious diseases at Madigan, worked with us and got us to Seattle Children’s,” Mary says. “We lived a sheltered life for a year and a half. It was a life-changing experience.”
Treatment: Bone Marrow Transplantation
Because Manny is a nurse, the Pablos were allowed to keep Madysen at home before her transplant, which is unusual because of the possibility for infection.
The day after they learned that their eldest son, Storm, who was 14 at the time, was a perfect match for Madysen’s bone marrow transplant, Manny was deployed to Iraq with the U.S. Army.
“Fortunately, two months later they sent him home because of the transplant,” Mary says. “Two weeks later, we met Dr. Lauri Burroughs and Dr. Colleen Delaney at Fred Hutchinson Cancer Research Center.
“Signing the papers was hard,” Mary recalls. “It was heartbreaking because the treatment could turn out good, or it could turn out badly. But if we did nothing, Mady certainly would not be here.” Most children do not live past one year if this disease is not noticed.
Mary says the family relied on their faith, their doctors, and taking things day-by-day to get by. “We were always the ones helping others,” Mary says. “Here we were needing and taking help. It was hard. But in many ways, it was a wonderful experience. You sit down, grab the family and say, it’s what was dealt to us and we did it all.
Madysen was admitted to Seattle Children’s for chemotherapy and radiation to prepare for the transplant. The Pablos lived at the Ronald McDonald House near Seattle Children’s and the two brothers went to school at the Hutch School, “which was one of the best decisions I made,” Mary says, “because we all lived at the Ronald McDonald House, along with my parents, and the Hutch School was wonderful.”
Madysen received her bone-marrow transplant on October 9, 2006. She stayed in the hospital for one month and lived with her family at the Ronald McDonald House for four months after that.
Madysen is doing very well and considered cured of her disease. Although she has had some problems with graft-versus-host disease and her immune system hasn’t kicked in fully, she looks and acts like an average three year-old child. She is reaching all of her milestones, which is amazing to her parents, who thought she would never sit up, walk, or talk.
“SCCA and Seattle Children’s took such good care of us. It is a very special place,” Mary says. “It is a true partnership. Manny has worked at many hospitals and you don’t get the same level of care everywhere. From the front desk people to the volunteers, they all took such good care of us. Because of all of the support and care, I tried to stay there as long as I could!”