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utsfl:classroom:seminars:pbh203h [2020/08/12 16:55] – Christina Lee Fast balleyneutsfl:classroom:seminars:pbh203h [2023/08/18 15:58] (current) – mmccann
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 ====== PBH203H: Health of the Child ====== ====== PBH203H: Health of the Child ======
 +FIXME review this website:
 +https://www.everylifecounts.ie/
 +
 +{{youtube>FWWW1lMrLAE}}
 +
 +===== Premature Birth ======
 +Amazing story:
 +https://www.guinnessworldrecords.com/news/2023/3/0-chance-of-survival-worlds-most-premature-twins-defy-doctors-740148
 +
 +Had to fight to get medical care at this extremely early stage
 +
 +{{youtube>kgLNK4jUhT0}}
 +
 ===== Ablism: Non-Terminal Disability Issues ===== ===== Ablism: Non-Terminal Disability Issues =====
   * FIXME amniocentisis, pre-natal screening, eugenics   * FIXME amniocentisis, pre-natal screening, eugenics
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   * [[https://www.lifesitenews.com/opinion/meet-noah-wall-the-boy-without-a-brain-talks-counts-and-goes-to-school|Noah Wall]]   * [[https://www.lifesitenews.com/opinion/meet-noah-wall-the-boy-without-a-brain-talks-counts-and-goes-to-school|Noah Wall]]
  
 +[[https://youtu.be/UkKi4B4yvdA]]
 +
 +https://www.instagram.com/reel/CvIbKQdNBvV/?igshid=MzRlODBiNWFlZA==
  
 ===== Terminal/Life Threatening Prognoses ===== ===== Terminal/Life Threatening Prognoses =====
   * Terminal/bleak prognosis   * Terminal/bleak prognosis
     * [[wp>Anencephaly]]     * [[wp>Anencephaly]]
-    * [[wp>Trisomy 18]] - Eliot+      * Story of Grace and the founding of the organization, //Carrying to Term//:https://carryingtoterm.org/stories/stephanie-and-andy-story/ 
 +      * {{youtube>Ho-Jb0MngX8}} 
 +      * https://www.dyingtomeetyou.com/p/she-who-brings-happiness?fbclid=IwAR1GLE4dzfBrPYQLnwcAwITi5DKBz4caeDg_c6wCqrrDKMNBFT6XEeZHgyk John Serafini, whose daughter Beatrice had anencephaly and died 38 minutes after birth 
 + 
 +> John also mentioned that he found the term “life-limiting condition” better language compared to some of the alternatives he heard throughout their experience. “But,” he stressed, **“it’s important to remember that all of our lives have ‘limiting conditions.’”** 
 + 
 +    * [[wp>Trisomy 18]] (Edward's Syndrome) - Eliot
       * {{youtube>th6Njr-qkq0}}       * {{youtube>th6Njr-qkq0}}
       * Eliot's legacy: 99 Balloons and Matt Mooney FIXME details from 2016 Toronto visit...       * Eliot's legacy: 99 Balloons and Matt Mooney FIXME details from 2016 Toronto visit...
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     * Remember Trisomy 18, and how it's always terminal?     * Remember Trisomy 18, and how it's always terminal?
     * {{youtube>bzPK4Kjtxuk}} FIXME narrow down the time range for a shorter excerpt     * {{youtube>bzPK4Kjtxuk}} FIXME narrow down the time range for a shorter excerpt
-      * Brandon's opening+      * Brandon's personal introduction 
 +      * He goes through the dehumanizing ways in which medical professionals and textbooks refer to people with trisomy 13 or trisomy 18 (e.g. "may develop personality")
       * Down Syndrome stats (5min)       * Down Syndrome stats (5min)
       * What the medical community has said about other people living with mosiaic trisomy 18 (~10min?)       * What the medical community has said about other people living with mosiaic trisomy 18 (~10min?)
 +        * dehumanizing clinic images that pathologize people, instead of photos of trisomy kids with their families
 +        * Doctors often tell parents: "no survivors" - yet just look on social media and at the SOFT community and you can see the survivors
       * Dr. Will Johnson: "When you only see death as a solution you throw creativity out the window."       * Dr. Will Johnson: "When you only see death as a solution you throw creativity out the window."
     * OR {{youtube>Lnynjzf6vDs}}     * OR {{youtube>Lnynjzf6vDs}}