Our Trisomy Community Has a Voice...
Children with Trisomy 13 and 18 and Their Families are Happy!
On 7/23/2012, a precedent-setting study was published in PEDIATRICS – the official journal of the American Academy of Pediatrics. The study consists of 503 invitations sent to families using social networks as support systems in the care and management of their trisomy 13 or 18 child. An amazing 332 questionnaires were returned (87% response rate) representing 272 trisomy 13 or 18 children. I am proud to be one of those families!
Why is this precedent-setting?
- First of all, there are NO OTHER studies of trisomy 13/18 children represented by such a large sample group!
- Second of all, this study will challenge the medical community to rethink how they manage families facing a diagnosis like trisomy 13 or 18.
My personal hope is that the medical community will also start partnering with the real experts on trisomy – the PARENTS – to help make decisions in the care and management of future trisomy children. We are bringing together families worldwide through social networking, and working together to create resources that will give families the information they need to make informed decisions about their trisomy children. Some of this information is based off of the small number of medical studies (with small sample sizes) that have already been published on trisomy 18 and 13 children. But the majority of it comes from the actual experiences of hundreds of parents and family members involved in the direct care of a trisomy child. Some of this information is already being captured (and has been for years) through a project called TRIS (Tracking Rare Incidence Syndromes) and through the annual conferences and medical information collected through SOFT – Support Organization for Trisomy 18, 13, and Related Conditions. There are also several social networking groups on facebook and nonprofit trisomy organizations working together to create a Parent Experiential Database to summarize much of the knowledge learned and shared between trisomy parents dealing with complex health issues. The beginnings of this parent database will be captured by the end on 2012 on www.hopefortrisomy.org. We hope this will also inspire the medical community to do more studies on our children, and to change the view that trisomy 18 and 13 children are incompatible with life and not worth the time or effort to give compassionate and potentially life-saving care.
As for the Pediatrics-published study, one of the most well-published academic neonatologists in the world (and a true humanitarian) posted about the study on his neonatal research blog. He offers EXCELLENT ADVICE (and a little criticism) to his colleagues.
And here is just a brief look at how this new study has affected the news...