Monday, August 13, 2012

Barbara Farlow, a great example for everyone who cares about children with disabilities.

Barb & Annie Farlow.
Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

In the past few weeks I have written several articles about how medical professionals are treating (not treating) children who are born Trisomy 13/18.

Children born with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, are often considered "incompatible with life." When you learn about Trisomy 13/18 it becomes evident that the label "incompatible with life" is a death sentence because it leaves many parents without hope, when much hope exists.

Barb Farlow has done so much to co-ordinate information and encourage research studies concerning Trisomy 13/18. She got involved in these issues after the birth, and death of her daughter Annie.

Barb has turned a tragic story into positive outcomes for so many caring parents. This is Annie's storyLink to the story of Annie Farlow.

Three weeks ago, a research study was published in the Journal Pediatrics that found parents of children with Trisomy 13/18, considered the child to be happy and found that their lives were enriched by the child.

The research team in the study invited 503 parents of children with a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.
On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.
* 30% of the parents had requested a plan of treatment based on "full intervention."
* 79% of the children who received "full intervention" were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with "full Trisomy" 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.
Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

Link to the full blog article.

Link to more information about Annie Farlow.
Lilliana lives with Trisomy 18. She is not incompatible with life.

1 comment:

Unknown said...

I would really like to be in contact with Barbara Farlow. In April of 1985, I gave birth to my son, who was diagnosed with severe Trisomy 13. I was 18 years old and listened to my medical staff when they said that if he lived, it would be for less than one year and that he would have no quality of life, I had lost my daughter of only 15 days approximately 9 months prior to this, and was not in my proper state of mind to ask questions and make an informed decision. I would greatly like to talk with Barb and learn as much as I can on this condition. I would also like any help available, on how to get a copy of my son's medical records.