This family wanted "a child like this!" A friend of mine in Canada had a baby with trisomy 13. Like trisomy 18, this condition can be very grim but baby Annie was a miracle. She didn't have the common brain and heart defects and she could see and hear. Annie's parents wanted to provide medical treatment and give her a chance as long as it wouldn't cause her to suffer.
Something went very wrong with Annie's medical care. She died shortly after arrival at the children's hospital at the age of 80 days. A DNR order was placed without informed consent. There are missing records and missing narcotics. Annie's parents don't even know why she had respiratory distress. Neither do the doctors.
Annie's mom, Barb Farlow, has spent four years seeking answers, change and trying to bring awareness to the medical community about the value and purpose of each special child with trisomy 13 and 18. A philosophy professor heard about the situation and started a group called Justice for Annie on facebook. The support of the group will help the family obtain missing records that the Coroner and hospital are withholding. If you are a member of Facebook, they would really appreciate your support. It seems that there is a big cover-up involved.
Annie's mom was told after Annie died that one of the doctors involved in her care asked the others, "Who would want a child like that anyways?"
Annie's site is www.anniefarlow.com
You can also read more on facebook and please join "Justice for Annie"
Yesterday, a blogger with a child with an acquired severe disability took the challenge of answering that question quite beautifully.
http://severedisabilitykid.blogspot.com/2010/01/who-would-want-child-like-that.html
Dear Doctor:
Who would want a child "like that"? A person who wants to learn about love. A person who wants to know about self-sacrifice. A person who wants to know more about the value of life, who wants to move beyond the understanding of owning stuff to the understanding of giving and emptying of the self.
Who wants child "like that"? A person who is connected, a person who wants a challenge, a person who wants to face hell and own heaven right here, right now. A person who wants to grow and change and learn to navigate the waters of joy and despair, of choices deep and dark and profound.
Who wants one "like that"? Someone strong who wants to learn about weakness. Someone weak who wants to learn about strength. A person who wants to change the whole world, a person who wants to change one child's world. A person who wants to cry hard and laugh harder. A person who wants to drink deeply from what is sometimes bitter, sometimes sweet.
In short, who wants a child "like that"? A parent wants a child like that...their child...and they want to have every chance to do their job well. They deserve every support medical and social, emotional and financial that it takes to bring "that child's" life to fruition, to bring "that child's" gifts to the world into which "that child", for whatever reason, chose to enter.
Who are you to question the life of a child "like that"?
8 comments:
Great response to a question like that!
How sad for this family! And, how sad that there are doctors out there who think like that and who aren't really in the profession for saving people, INCLUDING "children like that"!
Thanks for sharing! Prayers for this family!
Just when I think there is no way I can appreciate Dr. B any more than I already do, a post like this pops up! So let me grab the mic and scream "THANK GOD FOR YOU DR.B!"
Love,
Lisa
Thanks for your support Cathy. You have been such a great friend all along.
And to Lisa's message....I do not know Dr. B, but I have grown to love her from all of the stories. It would be a great thing to recognize special doctors. Maybe we should have a SOFT award. Dr. B could be the first winner!!
We had a good relationship with our primary doctor. I even have a picture of his kids. We trusted him completely. It was such a shock to discover that Annie's had suffered progressive critical carbon dioxide for most of her life. Her little face turned and stayed bright red and they said, "just a medication reaction." This was not true. It was from the carbon dioxide.
Nothing like this, with the coroner and government involved could ever happen in the US. It seems that the gov't creates the rationing policies, the public hospitals implement them and if there is a slip up, the Coroner's office covers it up.
Barb
wow what a powerful comeback.
Thank you for sharing this Cathy. Wow, what a mindless question to ask anyone with a heart. God creates these special little ones for people who's hearts are big enough to be taught by the littlest of these. Love you Cathy, praying for Annie's family and joining the cause.
Love and Hugs, Laurie
Barb and family are so amazing and I am so grateful that she is pursuing this issue. By getting to the bottom of what happended to their precious child they will get justice for Annie and hopefully protect children "like this".
Thank you for bringing them to the attention of Annabel's followers. You are not only an amazing mom but an incredible, supportive friend.
I sincerely hope that everyone takes the opportunity to go to Justice for Annie. We need to stand up for and protect these beautiful children who deserve every medical advantage that is available.
Thank you so much for posting this! I saw their story months ago and will join the FB group. SO happy to see the pictures of Annabel, she looks precious and so happy! Love you guys and sending up prayers for all families with children "like that".
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