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Letter to the Editor Response F Paris et al. Commentary

Journal of Perinatology (2004) 24, 333–334. doi:10.1038/sj.jp.7211098 for near- victims? The experts advocated prompt hyperbaric treatment, yet the treating physicians made every effort to delay our ability to obtain it. ‘‘Whose decision is it’’? Dear Editor: It was my wife’s and mine when the treating physicians did not act The Commentary1 alleging to report the circumstances in what we believed was our son’s best interest. surrounding my family’s decision to sue a hospital in order to The Director of the Pediatric Intensive Care Unit adamantly obtain hyperbaric oxygen treatment for our son is poorly refused to provide hyperbaric oxygen treatment not from any researched and contains many factual inaccuracies. concern for my son. In a meeting with hospital administration he Paris et al. reported that my son showed no improvement after cited payment issues, a drain on the hospital’s electrical system 40 hyperbaric oxygen treatments. This was clearly false, as the (the hyperbaric chamber uses a 9 V battery to power the intercom) newspapers at the time reported.2,3 Curiously, the statement was and a safety risk to the hospital (the system was approved by the not referenced. The fact is that my son, who was given a hopeless Fire Marshall prior to the first treatment). prognosis and who was expected to die within 4 days, did improve. Paris et al. impugn the motives of the hyperbaric center that His clinical improvement was accompanied by significant provided the equipment for treatment. They make the assumption improvement in his single photon emission computerized that the motives of a not-for-profit hospital and its contracted for- tomography (SPECT) scan. We sent the scans done pretreatment profit corporate physicians are above reproach or question, while and after 40 treatments to two outside experts, including a those of a for-profit clinic are tainted with self-interest. This physician at the University of California at Los Angeles, because the hyperbaric center donated the hyperbaric chamber free of charge first scan was misread by hospital physicians as ‘‘normal’’. A third for my son’s treatment. The not-for-profit hospital required that my scan after 100 treatments also showed continued improvement. At family pay for the oxygen, and any damage to the floor tiles, walls the present time, my son, who was given a hopeless prognosis, is or stretcher resulting from transporting my son to the treatment alert, responds appropriately to visual and verbal stimuli by room. vocalizing or pressing appropriate buttons on command, is learning Paris et al. imply that hyperbaric oxygenation is in the same numbers, letters and colors, and continues to slowly improve. category as the intervention discussed by FD Moore, which involved Paris et al. express concern about physician parents having too the evisceration of four children and then transplanting stomach, much say about their children’s treatment. Does the status of a pancreas, small intestine, liver, and (in two cases) colon, with physician/parent make one incapable of researching and reading disastrous results. In fact, there is substantial literature to justify scientific articles so as to make a ‘‘carefully reasoned parental the use of hyperbaric oxygenation in anoxic encephalopathies,4 of judgement’’? which near-drowning is one subset. The article mentioned that I am an ophthalmologist, as the Paris et al. stated concerns that the treatment might destroy my intensivists taking care of my son and their attorneys frequently son’s chance for recovery. However, absolutely no hope was given pointed out. Ophthalmologists are physicians. Though I was on the for him at any time. My wife and I chose hyperbaric oxygen faculty of Harvard, a Visiting Scientist at MIT, a Visiting Professor treatment not from a feeling of ‘‘guilt and ,’’ but to give my in China, the holder of 19 issued or pending patents and on staff at son the best chance for survival. This decision was reinforced by the hospital, I was at my son’s bedside not as an ophthalmologist, the available literature, many telephone calls to experts in the field but as his father. Who is more likely than a parent to place a and consultations with other physicians I trust. child’s welfare above all else? Paris et al. also seem to be completely unfamiliar with the Paris et al. assert that the treating physicians were ‘‘acting in details of treatment. My wife or I accompanied our son into the my son’s interest’’ or as ‘‘advocates for the patient’s well being’’. chamber, which took 3–4 min to reach depth or resurface, not the Why should their motives, or clinical competence be taken for 15 min that Paris et al. state. These questions could have been granted? Were they ‘‘acting in my son’s interest’’ or as an easily answered had the authors contacted us. Moreover, how can ‘‘advocate for the patient’s well-being’’ when they refused to speak the authors presume to pass judgment on the motives of parents to a series of recognized experts in the field, or look at the articles I with whom they have never even spoken to? My son experienced no had obtained including the Institutional Review Board protocols problems with the treatment, and indeed it has been shown to be from another university center performing hyperbaric oxygen remarkably safe in millions of treatments worldwide.

Journal of Perinatology 2004; 24:333–334 r 2004 Nature Publishing Group All rights reserved. 0743-8346/04 $25 www.nature.com/jp 333 Letter to the Editor Letter to the Editor

The Commentary also stated that the hyperbaric 2. Rhor M, Cabral E. Justin, a love story. Miami Herald (Broward edition) July study5 demonstrated that hyperbaric oxygen was without benefit. 4, 2002. That is also incorrect. The control group was not truly a control 3. Quigley J. Tot who nearly drowned improving. Miami Herald (Broward group, which was subsequently pointed out in Correspondence6–8 edition) September 7 2002. following the publication of the article and confirmed by one of the 4. Harch PG, Neubauer RA. Hyperbaric in global study coauthors at the International Congress on Hyperbaric cerebral ischemia/anoxia and coma. In: Jain KK, editor. Textbook of .9 . 3rd editor. Seattle, Washington: Hogrefe & Huber; 1999, 319–49. This Commentary will probably be cited to justify denial of life- 5. Collet J-P, Vanasse M, Marois P, et al. Hyperbaric oxygen for children saving treatment to other patients. It would be irresponsible and with cerebral palsy: a randomized multicentre trial. Lancet 2001;357: unethical to allow its misleading and inaccurate presentation of 582–6. the facts of the case to go unrefuted. 6. Neubauer RA. Correspondence: hyperbaric oxygenation for cerebral palsy. Lancet 2001;357:2052. JEFFREY N WEISS, MD 7. James PB. Correspondence: hyperbaric oxygenation for cerebral palsy. Retina Associates of South Florida Lancet 2001;357:2052–3. Margate, FL, USA 8. Heuser G, Uszler JM. Correspondence: hyperbaric oxygenation for cerebral palsy. Lancet 2001;357:2053–4. 9. Marois P. XIV International Congress on Hyperbaric Medicine, San References Francisco, CA, October 2002. 1. Paris JJ, Schreiber, MD, Reardon, FE. Hyperbaric oxygen therapy for a neurologically devastated child: whose decision is it? J Perinatol 2003;23:250–3. Response Editor’s comment

Journal of Perinatology (2004) 24, 334. doi:10.1038/sj.jp.7211099 received several letters regarding the Paris et al. Commentary. I decided that Dr. Weiss had the most standing in this issue and therefore only his letter was accepted for publication. We are deeply sympathetic regarding the tragedy that befell the Weiss family when their child suffered a near-drowning accident. EDWARD E LAWSON, MD Dr Weiss’ letter is published without further comment. Although we Editor

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