Navigation Links
Children with trisomy 13 and 18 and their families are happy
Date:7/22/2012

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. The study was conducted by Dr. Annie Janvier of the Sainte-Justine University Hospital Center and the University of Montreal with the special collaboration of the mother of a child who died from trisomy 13, Barbara Farlow, Eng, MSc as the second author.

The study interviewed 332 parents who live or have lived with 272 children with trisomy 13 or 18. It turns out that their experience diverges substantially from what healthcare providers said it would be, according to which their child would have been "incompatible with life" (87 %), would have been "a vegetable" (50 %), would have led "a life of suffering" (57 %) or would have "ruin their family or life as a couple" (23 %).

It should be noted that trisomies 13 and 18 are rare chromosome disorders that are most often diagnosed before birth and sometimes after. Children who have received these diagnoses generally do not survive beyond their first year of life, while some who do have severe disabilities and a short life. When trisomy 13 or 18 is diagnosed before birth, many parents decide to interrupt the pregnancy, whereas others choose to carry it to term and in such cases miscarriages are common.

As children with trisomies 13 or 18 generally receive palliative care at birth, some parents who opt to continue the pregnancy or desire life-prolonging interventions for their child encounter the prejudices of the medical system. In this regard, the parents interviewed in the study consider that caregivers often view their child in terms of a diagnosis ("a T13", "a lethal trisomy") rather than a unique baby.

"Our study points out that physicians and parents can have different views of what constitutes quality of life," states Dr. Annie Janvier, a neonatologist and co-founder of the Master's program in Pediatric Clinical Ethics at the University of Montreal. In fact, over 97% of the parents interviewed considered that their child was happy and its presence enriched the life of their family and their life as a couple regardless of longevity. "In the medical literature on all handicaps, disabled patients or their families rated their quality of life as being higher than caregivers did," adds Dr. Annie Janvier.

Parents who receive a new diagnosis of trisomy 13 and 18 and join a parental support group often acquire a more positive image of these diagnoses than the predictions made by the medical profession. In fact, according to the parents interviewed, belonging to a support group helped them view their experience positively. "Our research reveals that some parents who chose a path to accept and to love a disabled child with a short life expectancy have experienced happiness and enrichment. My hope is that this knowledge improves the ability of physicians to understand, communicate and make decisions with these parents," concludes Barbara Farlow.

Given the rarity of trisomy 13 or 18 cases (one case out of approximately every 10,500 births), the parents were recruited through online support groups that parents often join after receiving the physicians' diagnosis. Dr. Annie Janvier and Barbara Farlow sometimes give joint talks on the subject of trisomies 13 and 18.


'/>"/>

Contact: William Raillant-Clark
w.raillant-clark@umontreal.ca
514-566-3813
University of Montreal
Source:Eurekalert

Related medicine news :

1. Study: Children abused by parents face increased cancer risk
2. Plastics Chemical in Dental Fillings Might Affect Childrens Behavior: Study
3. Vitamin D deficiency and poorer lung function in asthmatic children treated with steroids
4. UC Davis study finds stray-bullet shootings frequently harm women and children
5. Simple Steps Can Shield Children From Dog Bites
6. Spending on childrens health rising faster than adults over past 4 years, says report
7. Miami Children’s Hospital Performs First Nerve Repair Surgery Using Avance® Nerve Graft Technology
8. Rate of severe reactions higher than thought in young children with food allergies
9. Study identifies causes for high rates of allergic reactions in children with food allergies
10. Genome-wide analysis shows previously undetected abnormalities in parents of affected children
11. Newtown Square Liberty to Donate 10 Percent of July Repairs to St. Jude Children’s Research Hospital
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:10/13/2017)... ... 2017 , ... Many families have long-term insurance that covers care for a ... waiver for care if the client has a cognitive impairment diagnosis. , “What ... is often waived, so the benefits from their insurance start immediately,” said Mechell Vieira, ...
(Date:10/13/2017)... NY (PRWEB) , ... October 13, 2017 , ... Ellevate ... people in business to advocate for action towards gender equality at their inaugural Summit ... from around the globe, and reached a social audience of over 3 million. To ...
(Date:10/13/2017)... ... October 13, 2017 , ... Yisrayl Hawkins, Pastor and ... explains one of the most popular and least understood books in the Holy Scriptures, ... puzzling descriptions that have baffled scholars for centuries. Many have tossed it off as ...
(Date:10/13/2017)... ... 13, 2017 , ... Coveros, a leader in agile coaching ... contract by the Center for Medicare and Medicaid Services (CMS). The Enterprise Agile ... of Agile methodologies in a consistent and high value manner across CMS programs. ...
(Date:10/13/2017)... ... October 13, 2017 , ... “America On The Brink”: the Christian ... On The Brink” is the creation of published author, William Nowers. Captain Nowers ... a WWII veteran, he spent thirty years in the Navy. Following his career ...
Breaking Medicine News(10 mins):
(Date:9/13/2017)... has been named the official orthopedic and sports medicine ... 2018 College Football Playoff (CFP) National Championship to be played ... Atlanta, Georgia . OrthoAtlanta is proud to be ... many activities leading up to, and including the national championship ... OrthoAtlanta serves ...
(Date:9/12/2017)... -- Consumer reviews on the independent review site Consumer Affairs ... for hearing aids, ranking it higher than Miracle Ear ™, ... ... Hearing Aids ... store that provides high performance, state-of-the-art, German-engineered hearing aids directly to ...
(Date:9/9/2017)... ... to Washington DC ... September 12 th – Monday, September 18 th .The Brain Tumor ... brain scans to the public.Where:  BTF,s Mobile MRI ... K Street NW, Washington, D.C.What:BTF brings its nationwide initiative, the Road to ...
Breaking Medicine Technology: