Perinatal Care conference: the experience of families with Children with Trisomy 13

Barbara Farlow, a medical researcher and mother to Annie who was born with Trisomy 13, spoke at the Perinatal Care Conference and gave a truly powerful presentation.

At the conference, Barbara spoke very movingly about her experience following her daughter’s prenatal diagnosis with Trisomy 13 and how she and her family dealt with the birth, life, and death of their much beloved daughter.  She also discussed how the medical care received by Annie - who died only 80 days after birth  -  was deemed by the Paediatric Death Review Committee to be “inappropriate”.

This tragedy - and this failure by the medical community to properly care for her daughter due to her life limiting condition - inspired Barbara to partner with two physicians, who are leaders in paediatric ethics, to survey and publish on the lived experiences of over 300 parents who have had children with Trisomy 13 or 18.      

Her study The Experience of Families with Children with Trisomy 13 and 18 in Social Networks (2012), had shown a vastly different picture of these children and their families than the one that has been presented by the media.   She had found that 98% of parents reported the overall effect of their child’s life was positive.  They overwhelmingly reported that their babies born with Trisomy 13 or 18 were happy and had, in fact, enriched their lives.   

Please take some time to watch Barbara’s fascinating presentation: https://www.youtube.com/watch?v=swUd0LqkSU4