Episode 5

The Bubble Boy

What do Jerry Seinfeld, John Travolta, and Jake Gyllenhaal have in common? They all fictionalized the real life story of David Vetter, a little boy who was quarantined from the world. Literally. 

Meet David

       David Phillip Vetter was born on September 21, 1971 in Houston, Texas and nearly immediately placed in sterilized conditions. In his new plastic home, nothing entered without first being fumigated for 4 hours in ethylene oxide at 160 Degrees Fahrenheit then allowed to sit for an additional 1 to 7 days. This included food, water, clothes, toys, and even air itself. Eventually, another sterilized chamber was built inside David's home, one of many accommodations made to help David acclimate to his strange life. It is estimated that nearly 1.3 million dollars were ultimately spent on David's medical care. This included a $50,000 "Mobile Biological Isolation System" created by NASA in 1977. Based off of spacesuit designs for astronauts re-entering a vessel, the suit allowed David to move somewhat freely for the first time. Ultimately, however, the psychological trauma associated with deep isolation was beginning to bear its burden. He worked closely with Child Psychologist, Mary Murphy, who documented David's anger and awareness toward his situation. Her book titled 'Was It Worth It? The True Story of David the Bubble Boy' was blocked from publication by David's Parents and Baylor University. Although there remains some controversy regarding the accuracy of the book, Mary testifies that David Vetter insisted she document a factual biography, no matter how unpleasant the the truth. David died February 22, 1984 from Burkitt's Lymphoma, a complication of Severe Combined Immunodeficiency, at the age of 12. 

David Vetter enclosed in his plastic home in Houston, Texas on December 17, 1976 

David Vetter: A Discussion on Medical Ethics 

     The looming question behind this tragic story remains: why? In order to address this, we have to take into account the varying perspectives that contributed to the making and preserving of the bubble. 

       Foremost, his parents and devout Catholics, David Vetter and Carol Ann Vetter, understood the implications of having another child. They were coached by physicians that there was a 50/50 chance that if they indeed had a son, he may be exposed to the same genetic condition that had taken their other child a few years earlier. Of course, they could very well have a healthy baby girl. There was simply no way of knowing for certain, but there was, after all, a 75% chance that they could have a healthy child. Given their religious beliefs, the Vetter's did not use birth control and abortion was out of the question. It is also speculated that they were influenced by Dr. Raphael Wilson, their immunologist, fellow Catholic and expert in germ-free studies. In a recent trip to Germany, Dr. Wilson was involved in a project that created a sterile isolation chamber for a set of twins with immunodeficiency. Though the mechanisms were unclear, the twins were eventually able to be released after a short time. This anecdotal evidence was hopeful and optimistic, but ultimately flawed. It insisted that the bubble was only a temporary solution. 

     The fact of the matter remains that few individuals were prepared for the emotional consequences of an extended stay. Those who designed the enclosure truly believed a cure was close and it was not so much a matter of if, but when, a solution would manifest. It wasn't until 1990 that the first treatment for SCID was successfully implemented. David would have, theoretically, been 18 years old at the time. Even if he had survived to see this, would the mental consequences have resulted in a healthy life? Even following his first bone marrow transplant, David expressed fear that the treatment may work and he would be unable to adapt to the outside world. Critics of the experiment argue that the whole ordeal should have never happened to begin with. There is little doubt that the trial benefited medical science wherein some 40+ academic papers were published on his case alone and his autopsy revealed more science behind SCID. 

David Vetter wears Mobile Biological Isolation System, an enclosed spacesuit created by NASA engineers in 1977

Clinical Vignette

A 19-year-old male presents to his Primary Care Physician (PCP) with the following symptoms:

- Fatigue 

- Fever 

- Sore throat (~ 5 days)

- Difficulty swallowing 

A thorough examination reveals

- Swollen lymph nodes

- Splenomegaly (an enlarged spleen)

- Tenderness on the back of the neck

- Various white spots on his tonsils

 

You ask more about the patient, who tells you he is a freshman in college and currently lives in the on-campus dorm. You are suspicious for Epstein-Barr Virus (EBV), but order labs to confirm your diagnosis. A blood test reveals hematocrit and white blood cell are both within normal range; however, the viral serology is positive. A monospot test confirms the presence of EBV. 

You inform the patient of your findings and discuss the risk of spreading the virus through fluids. You advise he rests for the next few weeks and to stay well-hydrated. You recommend NSAIDS (such as Ibuprofen) to reduce pain and fever. Return precautions regarding spleen rupture are thoroughly reviewed. 

Further Reading

For more information on the disease (SCID) itself: 

https://www.niaid.nih.gov/diseases-conditions/severe-combined-immunodeficiency-scid

For more information on David Vetter's personal account:

1) https://www.pbs.org/wgbh/americanexperience/features/bubble-caring-david-vetter/

2) https://www.pbs.org/wgbh/americanexperience/features/bubble-david-vetters-cognitive-development/

To watch a Bone Marrow Transplant (BMT) and Gene Therapy Treatment, respectively:

1) https://www.youtube.com/watch?v=yaEMUH1JuB8

2) https://www.youtube.com/watch?v=yLqhEZKxsoo

Note: the first youtube link shows a surgical operation and may be upsetting to some audiences. 

For images on this page:

1) https://www.flickr.com/photos/galaxyfm/359010143

2) https://commons.wikimedia.org/wiki/File:David_Vetter%27s_spacesuit.jpg

All images are free to use and share and not under copyright protection 

Credits

Hosts: Wafik and Jessica Sedhom

Guest appearances: Jessica Sedhom as Carol Ann Vetter and Jacob Klein as Immunologist  

Written and Produced by: Wafik and Jessica Sedhom

Edited by: Wafik Sedhom

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