logo
g Text Version
Beauty & Self
Books & Music
Career
Computers
Education
Family
Food & Wine
Health & Fitness
Hobbies & Crafts
Home & Garden
Money
News & Politics
Relationships
Religion & Spirituality
Sports
Travel & Culture
TV & Movies

dailyclick
Bored? Games!
Nutrition
Postcards
Take a Quiz
Rate My Photo

new
Action Movies
Bible Basics
Houseplants
Romance Movies
Creativity
Family Travel
Southwest USA


dailyclick
All times in EST

Full Schedule
g
g Children with Special Needs Site

BellaOnline's Children with Special Needs Editor

g

Organ Transplants and Developmental Disability


In 1995, Sandra Jensen's doctor recommended her for a heart/lung transplant that was approved by her insurance company but denied by both transplant evaluation teams in the state of California. Ms. Jensen, a disability advocate who was born with Down syndrome, had been diagnosed early in her life with a heart condition that is routinely corrected by surgery today. Her family had been told that there was no treatment at the time and they should expect her to live only into her teens. Unfortunately she was not referred to a cardiologist for care as she was growing up. and by the time she found a primary care doctor who did refer her to a cardiologist, her lungs had been irreparably harmed.

I read the story about Sandra Jensen being denied a transplant in the Sacramento Bee while visiting relatives during summer vacation, and typed the story into a message to the Down Syndrome Discussion Group (the down-syn list serv). Like so many others, I was alarmed and disgusted by her categorical exclusion from consideration - people with Down syndrome were 'not appropriate candidates' just because they had Down syndrome.

Ms. Jensen went on to become the first person in the world with Down syndrome to have a heart-lung transplant, and is credited with moving people with disabilities away from automatic exclusion from transplant consideration. Advocates lament that people with disabilities have moved from automatic only to selective inclusion, with a great number of obstacles along the way. Due to ignorance or prejudice, babies and children who have treatable medical conditions today may also go without treatment that could give them a healthy quality of life, eliminating, reducing or delaying the effects of illness or medical conditions that lead to the need for a life-saving transplant.

My son, who was born with Down syndrome, developed insulin dependent diabetes five years before Sandra Jensen's story caught my eye in the Sacramento Bee. Although he had excellent medical care and I was doing everything possible to keep his blood sugar under good control, of course I had considered that diabetes might damage his internal organs over the years, and that he might need a transplant when he was older. Like so many others, I had a keen personal interest in how Sandra Jensen's story turned out, as well as feeling the outrage of the situation in general. My personal hero in this story was William Bronston, M.D., who was one of Ms. Jensen's most effective supporters.

Please read the report below from the National Working Group on Disability and Transplantation to understand the issues that people with disabilities continue to struggle with today:

Lives Worth Saving: Organ Transplantation and People with Disabilities
http://www.mnddc.org/news/newsitems/transplant.html

These are issues that are not yet resolved. Currently, a girl named Amelia who has a family donor seems to have been refused a kidney transplant due to her intellectual disability.

Browse at your public library, local bookstore or online retailer for books about heart transplants, bone marrow, or kidney transplantation.

Disabled baby denied heart transplant
http://www.cnn.com/2013/11/30/health/disabled-transplants/?c=&page=0

January 13, 2012 - Terri Mauro
Hospital Denies Kidney Transplant to Girl With Intellectual Disability
http://specialchildren.about.com/b/2012/01/13/hospital-denies-kidney-transplant-because-of-girls-intellectual-disability.htm
Reassuring response from Children's Hospital of Philadelphia
Reassuring response from Children's Hospital of Philadelphia

Girl with Disability Receives Transplant
http://www.disabilityscoop.com/2013/08/01/following-receives-transplant/18431/

International Day of Mourning and Memory of the Lives of Disabled People
http://davehingsburger.blogspot.com/2012/01/january-23-international-day-of.html

An Update on Amelia
http://specialolympicsblog.wordpress.com/2012/02/07/an-update-on-amelia/

Hospital Sorry for Handling Of Girl with Disability
http://www.disabilityscoop.com/2012/02/16/hospital-sorry/15003/

Boy with kidney transplant, Down syndrome, enjoys music therapy
http://abclocal.go.com/wls/video?id=8549645&rss=rss-wls-video-8549645
Add Organ+Transplants+and+Developmental+Disability to Twitter Add Organ+Transplants+and+Developmental+Disability to Facebook Add Organ+Transplants+and+Developmental+Disability to MySpace Add Organ+Transplants+and+Developmental+Disability to Del.icio.us Digg Organ+Transplants+and+Developmental+Disability Add Organ+Transplants+and+Developmental+Disability to Yahoo My Web Add Organ+Transplants+and+Developmental+Disability to Google Bookmarks Add Organ+Transplants+and+Developmental+Disability to Stumbleupon Add Organ+Transplants+and+Developmental+Disability to Reddit



 



Asking More from Medical Professionals
Patient Advocacy for Children in Hospitals
Preparing for Emergencies with Children
RSS
Related Articles
Editor's Picks Articles
Top Ten Articles
Previous Features
Site Map




For FREE email updates, subscribe to the Children with Special Needs Newsletter


Past Issues


print
Printer Friendly
bookmark
Bookmark
tell friend
Tell a Friend
forum
Forum
email
Email Editor


Content copyright © 2014 by Pamela Wilson. All rights reserved.
This content was written by Pamela Wilson. If you wish to use this content in any manner, you need written permission. Contact Pamela Wilson for details.

g


g features
Privacy and Parent to Parent Advocacy

Postpartum Depression and Newborn Diagnosis

Age Appropriate Misbehavior - Toddlers Throw

Archives | Site Map

forum
Forum
email
Contact

Past Issues
memberscenter


vote
Poetry
Daily
Weekly
Monthly
Less than Monthly



BellaOnline on Facebook
g


| About BellaOnline | Privacy Policy | Advertising | Become an Editor |
Website copyright © 2014 Minerva WebWorks LLC. All rights reserved.


BellaOnline Editor