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.
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"?