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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, July 28, 2012

Encouraging new T-18/T-13 medical journal article

"[Jesus] said to them, 'Whoever receives this child in My name receives Me, and whoever receives Me receives Him who sent Me; for the one who is least among all of you, this is the one who is great.'” - Luke 9:48

Earlier this week, the Trisomy 18 and 13 world was blessed by a positive medical journal article.  It was co-written by a Barbara Farlow, the mother of a baby girl who lived with Trisomy 13.

The University of Montreal issued a news release about the article (read it here) and I found it encouraging from the start:

"Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published today in Pediatrics."

Lilly's above picture is a good representation of that.  I took her "famous smiling picture" as we waited in the hospital for a sleep study for her.  She was such a cheerful and contented little girl.  (She usually only seemed annoyed when she was hospitalized - and who could blame her for that?)  Lilly's above picture is part of a collage that Barbara made, of pictures of children from the Trisomy 18 and 13 community.  (Lilly's picture is in the 4th row down, in the upper right area.)

The abstract of the Journal article is here and the pdf of the article is here (a subscription is required to access the article itself). 

Keith Barrington, a neonatologist, clinical researcher, and chief of service at Sainte Justine University Health Center in Montréal wrote an excellent summary about the study.

As the mamma of a blessing that lived 17 months with Trisomy 18, I find these articles so encouraging.  I wish there was some way to reach EVERYONE in the medical community at once with this information.  I really hope and pray that I will have a chance to speak to some groups of doctors and or medical students at some point about this.  But in the meantime, I will continue to share Lilly's story with everyone, one person at a time.

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