Republish this article
5th January 2016

The Boy in the Bubble

A final twist in the remarkable story of a young boy with a rare immune disease that forced him to live life in a bubble.

David Vetter’s life was truly unique. From the day he was born until shortly before his death at the age of 12, David lived in a bubble.

He was born with a rare disorder known as severe combined immunodeficiency (SCID) – a condition that made him incapable of fighting infection even from everyday viruses and bacteria that most children can easily fend off.

David was placed in a protective plastic cocoon to keep him from bugs that would have killed him and his remarkable story captivated the public imagination in the United States throughout the 1970s and 1980s.

As this New York Times film shows, there was a sense of morbid fascination about the ‘Boy in the Bubble’ and his story inspired a Hollywood movie along with a plethora of cultural references – including The Simpsons – many of them deeply insensitive to the Vetter family’s harsh reality.

This was a boy who could never kiss his family and whose mother could never offer a comforting hug when he was upset or unwell. With a little help from a NASA-designed protective suit, he managed to leave his bubble on half a dozen occasions but his life was far from normal.

Having lost another child to SCID a year earlier, David’s mother had agreed to allow doctors place him in a bubble in the hope that medical research would find a cure for his illness.

The first hope was for a bone marrow transplant from his sister but that proved to be a dead-end when it transpired that his sister’s marrow was not compatible. David was trapped in the bubble, waiting for a medical miracle.

A lasting legacy

Doctors’ understanding of SCID has come a long way since the 1970s. As a rare genetic disease, one of the keys to curing people with the condition is an accurate diagnosis.

Rare conditions are often missed or confused with other diseases but David’s story raised public awareness and sparked strong interest in immune disorders like SCID.

As one of his doctors explains in the film, early and accurate diagnosis can lead to prompt bone marrow transplantation. If performed early enough, the success rate is 95%.

Today, babies with the genes that cause SCID can be diagnosed and treated before they are born. Prenatal screening can show whether a baby has the SCID gene and, if they do, a bone marrow transplant can be given in utero.

Instead of dying very soon after birth or living life in a protective bubble, people with the SCID gene can now live long and healthy lives.

Final chapter

David Vetter’s life was short. At the age of 12, doctors attempted a marrow transplant in the hope of freeing him from his sterile prison.

The procedure appeared to work at first but David began to feel ill shortly afterwards. The donor marrow contained a dormant cancer-causing virus that was ‘awoken’ in David’s body.

The Boy in the Bubble would leave his plastic cocoon for the first time so that doctors could try to treat him. But it was too late. Two weeks later he died.

Yet his story lives on and the legacy of the research that was inspired by his peculiar existence has accelerated scientific understanding of immunology, transplantation, cancer and genetics. Awareness, diagnosis and treatment of his rare condition were given a boost that has saved – and will save – countless lives.

David’s epitaph captures the impact of his unusual and all-too-short life.

“He never touched the world but the world was touched by him.”

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