BABY’S HEALTH ON THE BUBBLE
Family of boy with rare immune system disorder isn’t taking any chances seven months after life-changing transplant
Before pulling out of the after-school pickup line on a recent afternoon, Emil Romero turned and asked his children the standard daily questions: Are either of you feeling sick? Were any of your classmates sick?
Abraham, 8, and Kayla, 5, shook their heads.
The children know to answer honestly; their little brother’s life could depend on it.
The baby, Sebastian, was born in February without a functioning immune system, a once-universally fatal diagnosis called severe combined immunodeficency disorder, or SCID. The condition is known more commonly as bubble boy disease, named for the famed child who lived his entire life behind a wall of sterile plastic more than three decades ago.
In an effort to save Sebastian, doctors at Texas Children’s Hospital performed a stem cell transplant in May, essentially flushing out Sebastian’s defective white blood cells with chemotherapy treatments before replacing them with his mother’s via blood transfusion.
The transplant worked, but it could take a year or longer before his mother’s T-cells fully proliferate through Sebastian’s bloodstream, leaving him vulnerable to disease.
This is life for the Romeros, seven months later.
Emil stopped at a Chick-fil-A drive-
thru window before heading home with the older kids. The three of them stopped at the front door to remove their shoes, then walked in past a sign warning visitors not to enter if they are feeling ill: “We appreciate your help in keeping our sweet boy healthy and germ free.”
Inside, the children pumped three squirts of sanitizer onto their hands, then ran to the bathroom and directly into a warm shower to rinse off any pathogens they might have picked up at school, where it was rumored that some children and teachers had started coming down with the flu.
“We’re not taking any chances,” said Blanca Romero, bobbing and swaying with Sebastian, as her older children took their daily 4:30 p.m. showers. She was wearing a medical mask, three days after feeling a scratch in her throat and going to a doctor for an antibiotic.
She’s likely no longer contagious, she said, but “he’s still too vulnerable to risk it.”
Rising medical bills
She knows from experience. A month ago, in early November, she noticed Sebastian had a phlegmy cough. Blood tests the next day at Texas Children’s confirmed her fear: He had croup, a respiratory infection common in infants. In SCID babies, it can be deadly.
“Is the baby going to die?” Abraham sobbed after learning Sebastian had been admitted to the hospital, where he received medications to help his fledgling immune system fight off the virus.
After a few weeks, Sebastian was free of illness, and his doctors considered that a major success, a sign that his new immune system was growing stronger.
“He got rid of it,” said Dr. Cary Martinez, the boy’s transplant doctor. “That’s very good. Before we did the transplant, this virus could have killed him.”
Blanca was relieved, but she viewed the episode differently, not as a sign of how far Sebastian has come, but as a reminder of just how vulnerable he remains. She doubled down on her efforts to keep him isolated after that. The baby started crawling a couple of months ago, but when his mother and father are not holding him, they mostly keep him confined inside a playpen in the living room. He leaves the house only for medical appointments.
“He still hasn’t met the world,” Blanca said. “And the world still hasn’t met him.”
She’s almost always on edge, she said, worried about what virus the kids might bring home from school, about whether Sebastian’s T-cells will continue to multiply, about how they’re ever going to pay for it all. Both she and Emil lost their jobs after Sebastian’s initial diagnosis, and although they managed to get Sebastian onto Medicaid, Blanca no longer answers the phone when debt collectors call about the stack of unpaid medical bills, now more than $65,000 and counting.
She has also stopped sharing links to the fundraising page set up by a friend on social media after she received a couple of nasty notes from people telling her she shouldn’t expect handouts given how much people lost to Hurricane Harvey.
“Sometimes,” Blanca said, “the stress of it all seems like too much to deal with.”
On the other hand, Blanca knows Sebastian is fortunate to be alive. His rare genetic condition — only about 60 babies are diagnosed with SCID in the United States each year — was once universally fatal.
‘Can’t be too careful’
David Vetter, “The Boy in a Bubble,” spent his entire life inside a sterile plastic bubble at Texas Children’s before dying at the age of 12 in 1984.
Today, thanks to newborn blood screenings and major medical advancements over the past three decades, doctors can save most children with SCID if they catch the disease within the first three months of life.
“I’ve seen God’s grace on us over the past year,” Blanca said. “No matter how bad things feel, I have to just keep reminding myself of that.”
After getting out the shower, Abraham and Kayla climbed into Sebastian’s pen. Abraham pulled his baby brother onto his lap.
“Do you love baby?” Blanca asked. Abraham nodded. While the kids played, Blanca pulled the children’s fast-food dinner out of paper bags and laid it out on the dining room table. She pulled out a Clorox disinfecting wipe and scrubbed every ketchup packet.
“You can’t be too careful,” Blanca said.
Someday, she hopes that will no longer be true.