07/23/2012 04:15 EDT | Updated 09/22/2012 05:12 EDT

Parents and doctors see congenital disorders differently

A mother says social networks for families of children with serious chromosomal disorders help broaden the perspective of the quality of their lives, compared to what medical authorities are telling them.

Barbara Farlow co-authored a study in Monday's issue of the journal Pediatrics in a unique collaboration with doctors.

Farlow's daughter Annie died with trisomy 13. Children with trisomy 13 and trisomy 18 carry an extra copy or extra parts of chromosome 13 or chromosome 18 respectively.

The conditions are described in the study as "lethal," with a high risk of fetal loss and survival rates beyond one year of six to 12 per cent.

Farlow is also a member of Patients for Patient Safety Canada in Mississauga, Ont.

Annie, Farlow's 10th child, was born in 2005.

"We didn't want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy.… then we were willing and able to care for her, despite her limitations," Farlow said to The Canadian Press.

Before she was three months old, Annie was brought to hospital and stopped breathing. Hospital staff were slow to resuscitate her. Her parents later discovered Annie's medical file had a DNR — do not resuscitate — order on it, even though they hadn't authorized it.

Farlow said the couple was realistic about the condition but wanted to care for Annie as long as possible. Farlow has since spoken out to health professionals about offering similar children more options, an interest that led her to the research project on 18 online communities.

Between October 2010 and January 2011, the researchers sent surveys to parents of children who belong to support groups, inviting them to describe their experiences.

Short and valuable lives

"Although most parents described their children as having significant neurodevelopmental disorders, almost all parents reported a positive view of family life and the quality of life of their child trisomy 13 and trisomy 18," Dr. Anne Janvier of the department of pediatrics and clinical ethics at the University of Montreal and her co-authors concluded.

"These parents overwhelmingly described surviving children as happy and stated they were able to communicate with them to understand their needs. Parents seemed to accept their children's limitations and to celebrate their small achievements. When children died, parents viewed their short lives as being valuable."

At the same time, parents acknowledged significant financial sacrifices and that their children experienced more pain than other children.

Most parents, 63 per cent, said they met with a health care provider who helped them but 37 per cent who chose clinical intervention for their child said they felt judged.

Parents reported being told:

- Their child was incompatible with life, 87 per cent.

- Would live a life of suffering, 57 per cent.

- Would be a vegetable, 50 per cent.

- Would live a meaningless life, 50 per cent.

- Would ruin their marriage, 23 per cent.

- Would ruin their family, 23 per cent.

The most common negative comment made by parents was about health care providers who didn't see their baby as having value, such as referring to a baby as a "lethal Tee-18," or an "it."

Parents whose children survive for at least one year may be more likely to join supportive social networks, the authors noted.

They concluded that new parents who become involved with social networks may adopt views, hopes and expectations that are inconsistent with those of some health care providers.