|Barb & Annie Farlow.|
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 story. Link 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,On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.
* 30% of the parents had requested a plan of treatment based on "full intervention."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.
* 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.
Link to the full blog article.
Link to more information about Annie Farlow.
Lilliana lives with Trisomy 18. She is not incompatible with life.