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t m c » p u l s e | j u ly 2 0 1 7 9 created a bubble of social isolation for Romero and her family. Soon after his diagnosis, Romero's husband and the couple's other two children, Abraham, 7, and Kayla, 5, caught colds. Romero's instincts kicked in. She began formulating a way to keep Sebastian safe from pathogens and people, including his own family. First, she and her husband disinfected their entire home, buying four air filters to remove dust, pollen, mold and bacteria from the air. Then, they transformed the master bedroom into living quarters for her and Sebastian. Romero spent her days alone with the baby, venturing outside the room only for brief moments. "My husband would bring food into the bedroom whenever the kids would leave for school and he would leave for work," Romero said. "He would Lysol the entire house so that I could go ... in the living room or the kitchen to get something to eat, and then I'd go right back into the room." Romero notified her children's school of Sebastian's condition. The classrooms where Abraham and Kayla spent most of their time were sanitized daily. The school also let Romero know when any students were sent home with fevers, so that she could decide whether or not her children should go to school. Rather than eating lunch in the cafe- teria with the rest of his class, Abraham stayed in the classroom with his teacher and one friend. When the kids returned home from school, they were required to shower immediately to make sure they didn't carry any outside pollutants or germs into the house. Even then, the master bedroom was off limits. Although Abraham and Kayla were eager to hold and play with their baby brother, they had to stand far from the door. Romero would hold Sebastian up in the air "like in Lion King when they're showing Simba," she said, so they could see him. "They went from being able to touch and love the baby to not being able to touch him anymore," Romero said. "At first, they didn't understand, so they would cry a lot. … We had to explain to them that this was life-threatening and he could die." The kids were isolated from their mother, as well. "I couldn't hug my kids," Romero said. "I couldn't kiss them because I have to protect Sebastian as his main caregiver." Instead, she would give her two oldest children "pretend hugs." She would hug herself and they would hug themselves at the same time, as if they were hugging each other. "I feel guilty," Romero said. "Everybody tells me not to because Sebastian is the one who needs us the most right now, but I can't help, as a mother, to feel like I'm failing my other two children because they also need me." Looking for a match On May 14, Mother's Day, Blanca and Emil Romero packed their suitcases and drove Sebastian from their home in Katy to Texas Children's. They settled into a small room with a metal crib for Sebastian and a sofa that converted into a pull-out mattress. For the next month, this would be their second home. Currently, the only curative option for patients with SCID is a one-two punch of chemotherapy and a bone marrow transplant using stem cells. With this treatment, the survival rate at Texas Children's has been shown to be more than 90 percent for patients with SCID if treated within 3 months of age. Left untreated, however, SCID is almost always fatal from infection within a year of age. "Any time you see your patient go through a difficult procedure … you really worry about the risks you're subjecting them to, but SCID is really universally fatal … without interven- tion," Nicholas said. "I feel good recom- mending it to my patients because I know it's a lifesaving therapy." Stem cells are the "mother cells" of the blood that eventually mature into red blood cells, platelets and white blood cells, explained Caridad Martinez, M.D., Sebastian's bone mar- row transplant specialist and associate clinical director of the Pediatric Bone Marrow Transplant Program at Texas Children's Cancer and Hematology Centers. Healthy white blood cells can further divide into various subtypes— including lymphocytes, which are the body's B cells, T cells and NK cells. "Since the lymphocytes arise from stem cells that are located in the bone marrow, the only curative option for SCID patients is basically to replace that 'sick marrow' producing abnormal lymphocytes with a normal marrow producing functional lymphocytes," Martinez said. There are three options for patients who need a bone marrow transplant: a sibling donor, an unrelated marrow donor or a cord blood unit. A sibling donor is the preferred option, but only 25 percent of patients who need a bone marrow transplant will have a matched sibling donor. Patients Even a slight cold could turn deadly, a rash could turn into an infection and turn deadly. Anything could kill him. — BLANCA ROMERO Mother of Sebastian, who was born with SCID Emil Romero comforts his son in the hospital. NEWBORN SCREENING FOR SCID SCID is a rare condition, origi- nally thought to affect approx- imately 1 in 100,000 births. But as more states test for SCID in newborn screenings, experts are finding that the statistics are likely closer to 1 in 50,000 or 1 in 60,000 births, said Sarah Nicholas, M.D., allergy and immunology specialist at Texas Children's Hospital. "We've been missing all these SCID babies," Nicholas said. "These are babies who died early on of infection and people just thought they were unlucky. They got bad pneumonia and they died." The vast majority of states test for SCID in newborn screenings. Louisiana does not screen for SCID, and six other states—Nevada, Kansas, Indiana, Alabama, North Carolina and Arizona—plan to implement pilot screenings by the end of 2017. Texas added SCID to the newborn screening panel on Dec. 1, 2012. Since then, Nicholas and her team at Texas Children's have identified more than 35 babies with SCID and successfully treated them with bone marrow transplants. To learn more about becom- ing a bone marrow or cord blood donor, visit bethematch.org. without a matched sibling require either a transplant from an unrelated marrow donor or a cord blood unit— stem-cell-rich blood left in the umbilical cord and placenta after birth that was donated to a public cord blood bank. But none of these options worked for Sebastian, who is Hispanic. Minorities—including Hispanics, African Americans and Asians—are underrepresented in the bone marrow transplant registry, making it difficult for babies of those ethnic backgrounds to find a good donor match. (continued)