Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Children with trisomy 13 and 18 and their families are happy

23.07.2012
Quality of life perceived by parents is better than that predicted by physicians

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.

William Raillant-Clark | EurekAlert!
Further information:
http://www.umontreal.ca

More articles from Studies and Analyses:

nachricht Scientists Create New Map of Brain’s Immune System
18.02.2019 | Universitätsklinikum Freiburg

nachricht Forest Bird Community is endangered in South America
12.02.2019 | Humboldt-Universität zu Berlin

All articles from Studies and Analyses >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Light from a roll – hybrid OLED creates innovative and functional luminous surfaces

Up to now, OLEDs have been used exclusively as a novel lighting technology for use in luminaires and lamps. However, flexible organic technology can offer much more: as an active lighting surface, it can be combined with a wide variety of materials, not just to modify but to revolutionize the functionality and design of countless existing products. To exemplify this, the Fraunhofer FEP together with the company EMDE development of light GmbH will be presenting hybrid flexible OLEDs integrated into textile designs within the EU-funded project PI-SCALE for the first time at LOPEC (March 19-21, 2019 in Munich, Germany) as examples of some of the many possible applications.

The Fraunhofer FEP, a provider of research and development services in the field of organic electronics, has long been involved in the development of...

Im Focus: Regensburg physicists watch electron transfer in a single molecule

For the first time, an international team of scientists based in Regensburg, Germany, has recorded the orbitals of single molecules in different charge states in a novel type of microscopy. The research findings are published under the title “Mapping orbital changes upon electron transfer with tunneling microscopy on insulators” in the prestigious journal “Nature”.

The building blocks of matter surrounding us are atoms and molecules. The properties of that matter, however, are often not set by these building blocks...

Im Focus: University of Konstanz gains new insights into the recent development of the human immune system

Scientists at the University of Konstanz identify fierce competition between the human immune system and bacterial pathogens

Cell biologists from the University of Konstanz shed light on a recent evolutionary process in the human immune system and publish their findings in the...

Im Focus: Transformation through Light

Laser physicists have taken snapshots of carbon molecules C₆₀ showing how they transform in intense infrared light

When carbon molecules C₆₀ are exposed to an intense infrared light, they change their ball-like structure to a more elongated version. This has now been...

Im Focus: Famous “sandpile model” shown to move like a traveling sand dune

Researchers at IST Austria find new property of important physical model. Results published in PNAS

The so-called Abelian sandpile model has been studied by scientists for more than 30 years to better understand a physical phenomenon called self-organized...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

VideoLinks
Industry & Economy
Event News

Global Legal Hackathon at HAW Hamburg

11.02.2019 | Event News

The world of quantum chemistry meets in Heidelberg

30.01.2019 | Event News

Our digital society in 2040

16.01.2019 | Event News

 
Latest News

Terahertz wireless makes big strides in paving the way to technological singularity

19.02.2019 | Information Technology

Researchers find trigger that turns strep infections into flesh-eating disease

19.02.2019 | Health and Medicine

Light from a roll – hybrid OLED creates innovative and functional luminous surfaces

19.02.2019 | Trade Fair News

VideoLinks
Science & Research
Overview of more VideoLinks >>>