Monday, July 30, 2012

Hope for Lilliana - Lilliana lives with Trisomy 18. She is not "Incompatible with Life"

Lilliana on her first birthday.
Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The most recent edition of the show Facing Life Head-On - entitled Hope for Lilliana, focuses on the life of Lilliana Dennis, a one-year old child with Trisomy 18 who is living a miraculous life.

Children with Trisomy 18 are often considered "Incompatible with Life" and therefore denied medical treatment. Parents are usually discouraged from treating children with Trisomy 18 and most of these children do not live beyond their first year of life.

Lilliana is proving that Trisomy 18 is not a death sentence, and with the proper care children with Trisomy 13/18 can thrive and live a happy life. Link to the program.

A recent study published in the current edition of the Journal Paediatrics questioned parents who have children with Trisomy 13/18. The study confirmed that the parents of children with Trisomy 13/18 considered their child to be happy and found that their lives were enriched by their child.

Link to a recent article about the Journal Paediatrics study.

The research team invited 503 parents of children who had 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.
Barbara Farlow with daughter Annie.
* 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.

Last May, I came across the story of Lilliana Dennis. Lilliana Dennis is proving that Trisomy 13/18 is not a death sentence.  

Link to my first article about Lilliana Dennis.

Link to the Facing Life Head-On episode - Hope for Lilliana.

Link to a recent article about the Journal Paediatrics study.

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