tag:blogger.com,1999:blog-447392662850613354.post1424848850540934983..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Is newborn euthanasia an answer to parent pain?BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-447392662850613354.post-70713457521994118132014-12-23T00:38:32.451-05:002014-12-23T00:38:32.451-05:00Newborn euthanasia is already here. I was advised...Newborn euthanasia is already here. I was advised by doctors at a hospital not to feed my son and give him morphine for the pain until he died. We'd already agreed not to put in a g-tube and placed a DNR on his chart, but to just not feed him at all? That went too far. That was 11 years ago. At age 18 months, he finally did get a g-tube. He's 11 now. He has CP but is otherwise healthy.Unknownhttps://www.blogger.com/profile/00804249577741963149noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-9833791491973816752014-12-12T05:03:47.530-05:002014-12-12T05:03:47.530-05:00I guess the medical community abandoned healing/tr...I guess the medical community abandoned healing/treating for killing back in the 30s, in the T4 program in Germany. Then we were ashamed for a while, but now it´s rapidly returning - sometimes hidden, like in Norway where some physicians see it as their duty to let a baby or child with trisomy 18 or other grave disability die sooner rather than later. They do this in various ways, like not treating them for acute emergency situations, such as airway obstruction due to phlegm, by placing DNR orders etc. This may be done either without the parents´ knowledge, or against parental wishes.<br />Sometimes more obvious methods are used, like withdrawing fluids and nutrition, and in some countries by lethal injections. All are variants of the same thing - a baby is not saved or is actively killed because his or her life is deemed as not worth living. The only one who can say anything about the child´s quality of life, is the child itself.<br />The children I know with trisomy 18 seem very happy with their lives, and medical litterature supports this notion, not only for trisomies, but also for premies who grow up, and for people with Down syndrome.<br />How can parents trust a medical system that allows physicians to not save, or to actively kill disabled babies?Sirihttps://www.blogger.com/profile/15076958213080261984noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-12562598141435281622014-12-11T15:16:35.669-05:002014-12-11T15:16:35.669-05:00When did the medical community abandon healing/tre...When did the medical community abandon healing/treating for killing? Death is not a medical 'cure' for my daughter with Trisomy 18! Doctors should not be using the caloric chart as a how-to-guide to starve my disabled daughter to death and have the audacity to call that a medical treatment. It is appalling to me that they would use all that valuable medical knowledge on how to properly medicate a patient to give lethal doses. <br /><br />Doctors who hasten the death of their most vulnerable patients as a part of their routine care terrify me.<br /><br />Where are parents going to find doctors who have developed treatments and innovations for the sick and disabled if the medical community keeps wiping the handicapped from the face of the earth?<br /><br />It is a bizarre trail that leads from innovative medical care to medically sterile murder of disabled and unwanted people.FAITHhttps://www.blogger.com/profile/01461761958590582201noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-31096855704990479382014-12-11T12:43:40.161-05:002014-12-11T12:43:40.161-05:00We surveyed the largest group of parents (372) eve...We surveyed the largest group of parents (372) ever on a cohort of parents who had a baby with the genetic conditions trisomy 13 or 18. These conditions would be high on Udo's target list for euthanasia. Surviving children have significant disability and a shortened life span. <br /><br />Life worth living? Not according to most doctors and policy planners. <br /><br />Our first paper was published in Pediatrics and after the editor issued a press release, there were over 50 media articles in 5 languages. We reported that parents of surviving children described them as happy and the experience of raising them as enriching. Although parents reported that it was financially challenging, and more work then they expected, most marriages were described as improving (with very few reporting a negative effect) and parents believed that the disabled child had a positive influence on siblings. There were no regrets. <br /><br />Full Article: Open access http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.full.pdf+html Anonymoushttps://www.blogger.com/profile/07636858773609509357noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-13149740039240780032014-12-11T10:47:48.407-05:002014-12-11T10:47:48.407-05:00From your article Louise, Udo was quoted, ".....From your article Louise, Udo was quoted, "...once professionals have decided that further treatment would be futile and it’s a hopeless case..." <br /><br />I think this is the heart of the issue. Who decides? Futility more often than not is a judgement of quality of life and whether treatment is "worth it". Parents in the intensive care setting rely on physicians for information to make informed decisions. As Udo points out, it is the doctors who decide. Consent is based on the information they choose to provide based on the answer they want parents to give. As this article http://www.ncbi.nlm.nih.gov/pubmed/25164615 reveals, doctors are far more likely to offer interventions when they believe quality of life is high. <br /><br />The reality is that there is a limitation of the number of beds in the NICU and down the line, a limitation of therapists and home care nurses that are often required by the children who are targets of being labeled futile. How do these limitations affect the judgement of "futility" and determination of "lives worthy to be lived"? <br /><br />Udo knows nothing about the lives of children with disabilities and their families. He has no right contributing to this conversation. I've yet to meet the parents of a child with significant disabilities (and I know hundreds) who wish they had euthanized their child after birth.Anonymoushttps://www.blogger.com/profile/07636858773609509357noreply@blogger.com