Lifestyle // Health

Parents winning fight against disorder, as 'bubble boy' leaves hospital

Boy is producing infection-fighting white blood cells after transplant

Blanca Romero had steeled herself to spend at least another month at Texas Children's Hospital.

Her baby, born four months ago without a functioning immune system, was still so vulnerable, it seemed. She'd been told the boy might need to stay at the hospital well into summer after receiving a potentially lifesaving stem cell transplant three weeks ago.

Then, on Wednesday, his doctors stunned her: Sebastian, they said, was ready to go home.

The stem cells Blanca donated May 25 had fully grafted in the baby's bone marrow and had already begun to fill his body with infection-fighting white blood cells.

"You can leave today," one of the nurses had said.

Now, a couple hours later, Blanca was rushing to pack her suitcase and clean dirty dishes and straighten up the isolation room that had been her home since the beginning of May. Her husband, Emil, got Sebastian dressed in a onesie emblazoned with the words, "SCID Won't Stop This Kid."

BEYOND THE BUBBLE: Baby born without an immune system benefits from lessons learned decades ago 

Three-month-old Sebastian Romero has spent most of his life isolated from anyone except his parents and medical workers. Doctors at Texas Children's hope they can cure him of the genetic disease that left him with no immune system.
Video: Video by Mark Mulligan

SCID: Severe Combined Immunodeficency Disorder. That's been the enemy ever since they got the diagnosis back in February. Blanca likes to say she's been at war with the disease.

The rare genetic condition is known more commonly as Bubble Boy Disease, named for the most famous child ever born with it. David Vetter, "the Boy in a Bubble," had spent 12 years behind a wall of sterile plastic at Texas Children's before dying in 1984.

Today, doctors can save most children with SCID if they catch the disease within the first three months of life.

"I didn't expect to be going home this fast," Blanca said as she packed, a blend of excitement and nervousness in her voice.

Dr. Cary Martinez, the boy's transplant doctor, stopped by the room.

"Remember," she said, "if you notice any changes, any fever, any rash, you're going to pack your things right away and bring him in. We're not going to take any risks."

Martinez has been impressed with how well the boy has done with the transplant, but his immune system is still fragile. It likely won't fully develop for several more months, she said.

In the meantime, his parents will keep him isolated at home, separated from his older siblings and away from visitors. And he'll need to visit the hospital three times a week to make sure there are no complications.

"We're not done fighting yet," Blanca said, scooping Sebastian into her arms. "But so far we're winning."

She'd cried a couple weeks ago when the boy's thick black hair began to fall out, a side-effect from the chemotherapy treatments he'd received ahead of the transplant. Now she felt like she was going to cry again.

How to help

A fundraising page has been created to help the Romero family pay for Sebastian's medical care. Visit to contribute.

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She fastened a blue superhero cape around Sebastian's neck, then for the first time in weeks, carried him out of his isolation room.

Hospital staff had gathered in the hallway. "Celebrate good times" blared from a radio and the nursing staff cheered as Blanca carried her baby through a set of double doors.

Blanca bobbed to the music, smiling. Sebastian, overwhelmed by the excitement, began to wail.

Emil wasn't surprised. It was the first time his son had been surrounded by so many people, he said. And none of them were wearing masks or gloves.

"He's only used to blue people," Emil said, laughing.

Soon, the commotion had died down, Sebastian had stopped crying, and it was time to go home.