Comments on: The Case of the Bubble Boy http://www.scienceline.org/2006/07/23/blog-borza-bubble/ The Shortest Distance Between You and Science Tue, 16 Mar 2010 17:47:59 -0400 http://wordpress.org/?v=2.8.4 hourly 1 By: ell http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-4409 ell Tue, 26 Jan 2010 17:09:20 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-4409 Susan. being a parent does not automatically qualify you as a "decider of all that is right". sometimes parents get it wrong. I believe the vetters `got it wrong` I understand your bias (I`m glad you have a healthy son now)Davids isolation turned him into a psychotic, lonely and sad little boy and this cannot be defended. I have read all there is to read on this story and it is interesting but sad. if Davids plight has saved so many then ok. now that its happened we should reep the good from it. The sad truth is, it should never have been allowed to happen and a cure should have been discovered in a way that would not be at the sacrifice of a childs sanity and wellbeing.. Susan. being a parent does not automatically qualify you as a “decider of all that is right”. sometimes parents get it wrong. I believe the vetters `got it wrong` I understand your bias (I`m glad you have a healthy son now)Davids isolation turned him into a psychotic, lonely and sad little boy and this cannot be defended.
I have read all there is to read on this story and it is interesting but sad.
if Davids plight has saved so many then ok. now that its happened we should reep the good from it. The sad truth is, it should never have been allowed to happen and a cure should have been discovered in a way that would not be at the sacrifice of a childs sanity and wellbeing..

]]> By: ju http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-4408 ju Tue, 26 Jan 2010 16:22:27 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-4408 I must thankyou for this site, it has given me the chance to have an opinion and hear the views of others.. this is a sad story. maybe it served some good for future medical knowledge and many SCID sufferers have benefited greatly from it.. I I must thankyou for this site, it has given me the chance to have an opinion and hear the views of others.. this is a sad story. maybe it served some good for future medical knowledge and many SCID sufferers have benefited greatly from it.. I

]]> By: Lu http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-3106 Lu Fri, 12 Jun 2009 05:27:18 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-3106 I saw a documentary on this today and was shocked by how the three doctors involved in this case did not stop to consider the 'what ifs' of their 'experiment' because they were so buoyed up by unfounded optimism. I was even more disturbed that they still staunchly defended their actions even today and would have 'done it again'. David may not have died in vain (from a scientific point of view), but to him it may not have been a life worth living at all. It was heartbreaking to see him struggle to come to terms with his continued imprisonment. Susan, I challenge you to imagine what it would have been like for David, who lived in a constant state of hopelessness for 13 years of his unhappy life. Many scientfic experiments may be carried out for the 'greater good' but that does not mean that we should neglect to consider the suffering that can be experienced by one human being. A noble end does not always justify the means, and in this instance it is simply tragic how this poor child paid such a high price to further our store of scientific knowledge. I saw a documentary on this today and was shocked by how the three doctors involved in this case did not stop to consider the ‘what ifs’ of their ‘experiment’ because they were so buoyed up by unfounded optimism. I was even more disturbed that they still staunchly defended their actions even today and would have ‘done it again’.
David may not have died in vain (from a scientific point of view), but to him it may not have been a life worth living at all. It was heartbreaking to see him struggle to come to terms with his continued imprisonment. Susan, I challenge you to imagine what it would have been like for David, who lived in a constant state of hopelessness for 13 years of his unhappy life. Many scientfic experiments may be carried out for the ‘greater good’ but that does not mean that we should neglect to consider the suffering that can be experienced by one human being. A noble end does not always justify the means, and in this instance it is simply tragic how this poor child paid such a high price to further our store of scientific knowledge.

]]> By: Anaisel http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-1505 Anaisel Sat, 15 Mar 2008 04:17:34 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-1505 It is so sad about David's death, but this whole article made me open my eyes to possibilities.Thank you for this information. It is so sad about David’s death, but this whole article made me open my eyes to possibilities.Thank you for this information.

]]> By: wolf http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-885 wolf Thu, 24 May 2007 21:56:58 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-885 This really opened my eyes. I love wolves!!!!! This really opened my eyes. I love wolves!!!!!

]]> By: kacki http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-730 kacki Wed, 07 Mar 2007 00:24:39 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-730 i loved this article it made me like go like oh em geee! haha!well thanks for the update. im doing a project on this and it gave me so much like information! well thanks again i loved this article it made me like go like oh em geee! haha!well thanks for the update. im doing a project on this and it gave me so much like information! well thanks again

]]> By: Sabina http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-496 Sabina Wed, 18 Oct 2006 17:19:09 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-496 Thank you so much for sharing your story Susan, and letting us hear what you went through. You are certainly right that people would make different decisions in such complicated circumstances. It is wonderful that your son was saved by a stem cell transplant. I wish you and your family all the best! Thank you so much for sharing your story Susan, and letting us hear what you went through. You are certainly right that people would make different decisions in such complicated circumstances.

It is wonderful that your son was saved by a stem cell transplant. I wish you and your family all the best!

]]> By: Susan Ritchie http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-491 Susan Ritchie Tue, 17 Oct 2006 05:18:32 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-491 Ms. Borza, I am the mother of a SCID baby saved by a stem cell transplant. In reading your blog, I am concerned that you do not have a full picture of this family's story. I undertsand the inclination to view the actions of those involved as self centered, however, I challenge you to consider that there were no good options back then; this was a truly crucial treatment for this child, and yes, he would have died. Consider this- as a parent, I can tell you from experience most do not have- you will do anything, ANYTHING, to save your child's life. I would have gladly sacrificed my own life for that of my son's. And my experience with so very many physicians of varying specialties is that they have incredible empathy for the child and the family. They feel the desperation of the parent, and truly, truly want to help. All of us, the doctors and my husband and myself, had to make choices about the best way to protect my son while we waited for his stem cell transplant to engraft. They were worth it. My son is healthy now overall. He is HAPPY, and loved, and loving. And yes, living in severe isolation for 7 months(though not a plastic bubble, but confined to his hospital room) left areas of sensory processing difficulties. We continue to work on these through therapy, with great success. My point is, if they hadn't protected him while the transplant was engrafting, my son would have died. He almost did die, on numerous occassions. As his mother, I knew then and I know now that I could handle the separation from our family, the isolation of being confined to his room, because I had hope that the transplant would work. I believe that Mrs. Vetter had that same hope, and I believe her medical professionals did as well. So, please remember that Mrs. Vetter had a chance of having a perfectly normal son, but wasn't so lucky, and when faced with losing yet another son, took the only help the medical community could offer her. Please consider that Mrs. Vetter did the best she could for her son, that his doctors did the best they could. Certainly please remember that the alternative was for her to bury another child. Honestly, from my position with my son, though I could handle anything else we had to do to help him, I knew, and still know, that I could not survive his death. The answer to your thoughts is this--- the answer will be different for different people as to the best way to proceed in cases like these. And not you or I have walked in the shoes of these people. Each case must be dealt with individually. And yes, sometimes what medicine can offer to help isn't perfect, but is the best option they have available. (Anyone who has ever taken chemo for cancer, etc. can relate- just look at what those toxic chemicals due to their bodies, all of the extra side effects ranging from humiliating, to painful, uncomfortable and terrifying). This child, David, was beautiful, and I am so thankful for him. He did not die in vain. His life, his treatment, and his death directly contributed to the success of so many, including my son's transplant. Last piece of info to chew on- I was adopted at birth and had no way to know of the genetic mutation that would affect my son. Even so, approximately one third are spontaneous mutations anyway. My position is that anyone at any time can have a child with rare life threatening disease. And no one can decide the "right" or "wrong" path except the parent of that child. Thank you, Susan Ritchie, mother of Griffin Ritchie- a success story thanks to Dr. Rebecca Buckley of Duke Medical Center and too many others to list here. Ms. Borza,
I am the mother of a SCID baby saved by a stem cell transplant. In reading your blog, I am concerned that you do not have a full picture of this family’s story.
I undertsand the inclination to view the actions of those involved as self centered, however, I challenge you to consider that there were no good options back then; this was a truly crucial treatment for this child, and yes, he would have died.
Consider this- as a parent, I can tell you from experience most do not have- you will do anything, ANYTHING, to save your child’s life. I would have gladly sacrificed my own life for that of my son’s. And my experience with so very many physicians of varying specialties is that they have incredible empathy for the child and the family. They feel the desperation of the parent, and truly, truly want to help. All of us, the doctors and my husband and myself, had to make choices about the best way to protect my son while we waited for his stem cell transplant to engraft. They were worth it.
My son is healthy now overall. He is HAPPY, and loved, and loving. And yes, living in severe isolation for 7 months(though not a plastic bubble, but confined to his hospital room) left areas of sensory processing difficulties. We continue to work on these through therapy, with great success.
My point is, if they hadn’t protected him while the transplant was engrafting, my son would have died. He almost did die, on numerous occassions. As his mother, I knew then and I know now that I could handle the separation from our family, the isolation of being confined to his room, because I had hope that the transplant would work. I believe that Mrs. Vetter had that same hope, and I believe her medical professionals did as well.
So, please remember that Mrs. Vetter had a chance of having a perfectly normal son, but wasn’t so lucky, and when faced with losing yet another son, took the only help the medical community could offer her. Please consider that Mrs. Vetter did the best she could for her son, that his doctors did the best they could. Certainly please remember that the alternative was for her to bury another child. Honestly, from my position with my son, though I could handle anything else we had to do to help him, I knew, and still know, that I could not survive his death.
The answer to your thoughts is this— the answer will be different for different people as to the best way to proceed in cases like these. And not you or I have walked in the shoes of these people. Each case must be dealt with individually. And yes, sometimes what medicine can offer to help isn’t perfect, but is the best option they have available. (Anyone who has ever taken chemo for cancer, etc. can relate- just look at what those toxic chemicals due to their bodies, all of the extra side effects ranging from humiliating, to painful, uncomfortable and terrifying).
This child, David, was beautiful, and I am so thankful for him. He did not die in vain. His life, his treatment, and his death directly contributed to the success of so many, including my son’s transplant.
Last piece of info to chew on- I was adopted at birth and had no way to know of the genetic mutation that would affect my son. Even so, approximately one third are spontaneous mutations anyway. My position is that anyone at any time can have a child with rare life threatening disease. And no one can decide the “right” or “wrong” path except the parent of that child.
Thank you,
Susan Ritchie,
mother of Griffin Ritchie- a success story thanks to Dr. Rebecca Buckley of Duke Medical Center and too many others to list here.

]]> By: somedude http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-114 somedude Thu, 31 Aug 2006 03:09:52 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-114 lol Sabina: "owned, kthx." Daryl: "Im a noob" lol
Sabina: “owned, kthx.”
Daryl: “Im a noob”

]]> By: Daryl http://www.scienceline.org/2006/07/23/blog-borza-bubble/comment-page-1/#comment-99 Daryl Wed, 09 Aug 2006 23:53:17 +0000 http://scienceline.org/2006/07/23/072306_sabina_blog_bubble/#comment-99 Hello Sabina, First of all let me apologize for my own ignorance, I mistakenly read your blog as an article which led me to my unfounded conclusions. Secondly, thank you for not taking me to task over my assertions, very mature on your part, and more importantly thank you for answering many of my questions. I will look forward to reading more about this story and I would encourage you to write an article or essay on the topic to help enlighten more people on the subject. For what its worth, I am very impressed with your professionalism and I look forward to reading more of your work. I enjoy the chance to learn through websites such as this one, keep up the good work. Daryl Hello Sabina,
First of all let me apologize for my own ignorance, I mistakenly read your blog as an article which led me to my unfounded conclusions. Secondly, thank you for not taking me to task over my assertions, very mature on your part, and more importantly thank you for answering many of my questions. I will look forward to reading more about this story and I would encourage you to write an article or essay on the topic to help enlighten more people on the subject. For what its worth, I am very impressed with your professionalism and I look forward to reading more of your work. I enjoy the chance to learn through websites such as this one, keep up the good work.
Daryl

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