In a story told by his child psychologist at St. Luke's-Texas Children's Hospital, Mary Ada Murphy, Ph.D., provided her first-hand account of her relationship with David Vetter, the child known to the world as the "Bubble Boy". Due to the scientific zeal of doctors and religious authorities, and the compliance of his trusting family, he lived his life in a sterile chamber bereft of human touch from birth until a few days before his death at age 12 and a half. Murphy entrusted her manuscript with her colleague, Raymond J. Lawrence, who was the hospital chaplain in place during David's early years, and who convened the only formal ethics consultation on the Vetter case. Raymond brought the manuscript to print in June 2020.

Robert Charles Powell, MD, PhD, a psychiatrist and historian, has provided The Pastoral Report with a review of Bursting the Bubble: The Tortured Life and Untimely Death of David Vetter. The book can be found on Amazon in paperback or Kindle.  

Bursting The Bubble - book cover

BURSTING THE BUBBLE:

THE TORTURED LIFE AND UNTIMELY DEATH OF DAVID VETTER

– by Raymond J. Lawrence, MDiv, DMin

reviewed by Robert Charles Powell, MD, PhD

 

If you key “Mary Ada Murphy” into the Amazon Books search box, up pops a British page for her book, Was It Worth It? The True Story of David, the Bubble Boy. The earliest of four reviews there is dated May 2012 – but the book is noted as “not available”. The earliest of five reviews on GoodReads is dated February 2013 – but the book is noted as “not available” – except as a hard-to-find digital copy on the internet. AbeBooks – which tends to carry just about everything – notes a supposed publication date of 1995, by a company no longer in business – but the book is noted as “not available”. WorldCat also notes the 1995 date. It is not clear whether Murphy’s book ever appeared in printed form, as most references – and there are many more on the internet – are to the digital copy. So, we have multiple references – generally positive – to a book not easy to find. What are we to make of that? Most reviewers remark that this story indeed needs to be told – to be told widely. I agree – and I think that you will, too, once you have read more below.

***

It is not every day that a newborn begins life in a sterile bubble. During the meticulous preparations for his birth in 1971, was the infant, then child, then pre-adolescent “David, the Bubble Boy,” anticipated to be receiving medical care? – or to be enduring clinical study? Which was it? That was and is the question. Or, rather, that was and is the question that should have been asked almost fifty years ago. The answer should have been crystal clear – but was it? – when David Philip Vetter had a knowing conception and planned delivery? His brother, David Joseph, already had died a year earlier at age 29 weeks – of “severe combined immune deficiency” (SCID). Everyone involved knew that any future male baby born to those parents would have a fifty-fifty chance of meeting the same fate. The family had been reassured, though, that modern science would save the day.

***

In the history of medicine, one is hard-pressed to find any similar stories. David wasn’t “raised by wolves”. David wasn’t left entirely to his own devices. “David, the Bubble Boy” was “raised” in a major medical center – frequently in the public eye – with “the best of intentions”.

Laika, in late 1957, became one of the first animals launched into space. News media worldwide excitedly followed the story. Professionals quietly acknowledged up front that this would end badly, as there was no known way to return safely, to life on our planet Earth, this young dog.

David, in late 1971, became one of the first young humans to live virtually his entire life in a sterile, supposedly germ-free environment – literally in a “bubble”. News media worldwide excitedly followed the story. Professionals quietly acknowledged up front that this MIGHT end badly, as there was no known way to return safely, to life outside the bubble, this young man.

***

 “Young man.” That was part of the problem – part of the conceptual blindness. The challenge had been viewed as concerning an infant – at most a young child. Apparently, no one clearly envisioned that “the Bubble Boy” might be doomed to become “the Bubble Teen” – then “the Bubble Man” – without the chance for normal physical, even sexual, contact with another human being. His immaculate life was indeed to be lived “untouched by human hands”.

***

Biomedical experts, in 1971, assumed and hoped that a solution would be found – sooner rather than later – but it was not. Was it ethical merely to “assume” – merely to “hope” – that science would come to the rescue? Again, was this “medical care”? Or was this “clinical study”? Was the potential for triumph understood as equal to the potential for tragedy?

Yes, the situation was unprecedented – but is that a valid excuse? Much in medicine is unprecedented. Professionals still have a responsibility to think through as many contingencies as possible when human lives – in the broadest, most meaningful sense – are at stake. As Raymond J. Lawrence comments below, this case displays a profound failure of self-reflection.

British historian Robert G. W. Kirk summed up the whole case in this manner:

In his short life David possessed many identities from medical

marvel to laboratory animals to the irresolvable bioethical problem.

This episode in the history of medicine included ONE major finding – but the finding (a viral etiology of some lymphomas) was essentially accidental. This finding – at autopsy – did not relate directly either to David as a person or to the illness with which he lived and died.

Until age twelve – almost age thirteen – David lived in a clear plastic and plexiglass “bubble”. One of the saddest – even most anger-provoking – parts of the story told in this book is David’s early clear grasp of his situation. At age nine, he already knew he was going to die – either physically or emotionally – and soon. Three years later, he indeed did die – a mere fifteen days after the finally planned exit from his sterile incarceration.

Italian pediatrician Alberto Tommasini recently observed that David:

soon became aware of how his life was different from his

peers and how senseless it was to study things that he could

not experience in reality. It does not come as a surprise that

he started developing unbearable sadness and depression

despite the support from …, a psychologist [who] … wrote a

concerning tale about her experience with the boy.

At age nine David knew:

We have to find a way out of this mess. … Why didn’t they do something to me before I was old enough to care? … When I was three I wouldn’t have cared. When all this mess started …, didn’t they ever think about or realize that they were dealing with a life, my life? They made decisions without ever thinking about anything except what they wanted to do; not about all this crap, I’m in ….

I am a mouse surrounded by ten cats, and there are no dogs to chase the cats away. The worst feeling about being caged in this damn crap and shit is that I feel so helpless. It is so awful to feel … helpless!

I’m the only one in this mess that can make a decision, and I’ve decided the only solution is to come out. We both know I can’t survive. Dying doesn’t worry me. Not knowing what will happen to me is the problem – I can’t stand not knowing. [pp.165-166]

That was David’s lament in 1980, as recorded by one of his closest friends during his short life, the clinical child psychologist who, “with eyes wide open,” became a de facto “hospital mother”: Mary Ada Murphy. She stayed deeply in his life – from September 1974 to February 1984 – almost a decade – until the very end. This book is at least partially a tribute to her dedication.

As reported by Murphy, David, himself, recognized the unique and unexpected nature of their unofficial relationship. They were friends! He doubted that anyone would want to read her study of his perceptual idiosyncrasies, but in early 1983 he suggested that readers

would be interested in a paper about our private world. Do you

think anyone could understand a relationship between a boy and

an older woman? I know, we should write a book and the title will be

“The Boy in the Isolator and the Woman Who Never Touched Him”. [p.186]

Thank goodness he had “Mary”.

***

In July 1974, Congress signed into law The National Research Act, which, in September 1978, brought to light the United States’ first federal code of “ethical principles and guidelines for protection of human subjects of research” – which became operational in April 1979. Did the purview of the then new “Office for Protection from Research Risks” apply retroactively to “David, the Bubble Boy” – then not quite eight years old? That it did or did not remains unclear. Conceptually, the notion of an “Institutional Review Board” (IRB) was inherent in the 1974 legislation. Whether David’s situation – either medical care or clinical study – or both – was eventually overseen by an IRB remains unclear.

***

It also remains unclear whether David had any recognized rights in regard to decisions about his treatment – including his incarceration. Interestingly enough, he, as a minor, probably had few if any rights, since his confinement was medically ordered. Even as a minor, however, he would have had some right to assent and dissent in regard to treatment if his confinement had been legally ordered. As both Murphy and Lawrence point out, such incarceration – devoid of the opportunity for human contact – presents “an ethical quagmire”.

***

While psychologist Murphy first met David in late 1974, chaplain Lawrence had already encountered him – in an administrative rather than clinical capacity – in late 1973. Both Murphy and Lawrence quickly figured out that there was a problem. Since a renowned ethicist – Joseph Fletcher – was teaching nearby that year, Lawrence organized an “Ethical Case Conference,” including other invited experts, in early 1975 to review little David’s troubling situation. Lawrence left that hospital some months later, but maintained close contact with Murphy, with awareness of her work, for over three decades. David asked “Mary” to tell “the true story” after his death. Both knew he was dying. Murphy, decades ago, asked Lawrence to try to disseminate her detailed narrative – even while recognizing that “the true story” might not be one many would want to know.

 

 

 

 

Robert Charles Powell, MD, PhD
Psychiatrist & Medical Historian
Wakefield, MA
[email protected]

 

 

 

 

References:

Kirk, Robert G. W. "Life in a Germ-Free World": Isolating Life from the Laboratory Animal to the Bubble Boy Bull Hist Med. 2012 Summer;87(2):237-275; http://muse.jhu.edu/article/485805 ; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3477854/

Tommasini, Alberto et al. "Innovation for rare diseases and bioethical concerns:
A thin thread between medical progress and suffering." World J Clin Pediatr. 2018 Aug 30;7(3): 75-82; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125142/