ITA Founders
International Trisomy Alliance was founded in 2012 by Barb Farlow, co-author of a survey published in Pediatrics about the lives of children with trisomy 13 and trisomy 18; Jenny Robbins, a founder of SOFT UK; Debbie Bruns, Associate Professor and Principal Investigator of the Tracking Rare Incidence Syndromes project; and Siri Fuglem Berg MD Ph.D. an anesthesiologist who had a prenatal diagnosis of full trisomy 18, and founded a Norwegian web-site, www.trisomi18.com, to support other families. They hope to empower parents to make optimal decisions after a diagnosis of trisomy 13/ 18, and advisors are a global network of physicians, academics and parents who have an active interest in families and children with these syndromes. Hover over each photograph and the name will show.
Barb Farlow MBA and Jenny Robbins
Barb Farlow and Jenny Robbins have been passionate advocates for parents of children with trisomy 13 and 18 since the birth of their own daughters. They connected at the SOFT UK 2012 conference and decided to unite their shared passion by founding International Trisomy Alliance.
Barb and Jenny
Barb became involved in advocacy for children with trisomy 13 and 18 after her daughter Annie died at the age of 80 days. The Coroner’s Committee declared Annie’s final medical care was inappropriate, and the hospital apologized and explained that communication for children like Annie does not always occur as they would wish. Barb’s driving goal has been to improve communication by educating parents and providers about the experience of having a child with trisomy 13 or 18. In partnership with two physicians, Barb surveyed hundreds of parents. Their publication, 'The experience of families with children with trisomy 13/18 in social networks’, was published in Pediatrics in 2012.
Jenny’s journey began in 1988 when her four day old daughter Beth was diagnosed with trisomy 13 or Patau syndrome. This was pre internet, and after a fruitless search for information to care for Beth during her three months of life, Jenny surveyed parents of children with trisomy 13 and 18 in several continents and published a parent friendly book Your Baby with the findings. Subsequently, Jenny founded and ran SOFT UK for over 20 years as well as serving on several groups including the UK NHS Fetal Anomaly Program Public and Professional Information Group, and the NHS Screening Programs Trisomy 13 and 18 National Policy Group. Jenny edits the ITA Newsletter, helps to write the ITA booklets, and is the webmaster.
Jenny’s journey began in 1988 when her four day old daughter Beth was diagnosed with trisomy 13 or Patau syndrome. This was pre internet, and after a fruitless search for information to care for Beth during her three months of life, Jenny surveyed parents of children with trisomy 13 and 18 in several continents and published a parent friendly book Your Baby with the findings. Subsequently, Jenny founded and ran SOFT UK for over 20 years as well as serving on several groups including the UK NHS Fetal Anomaly Program Public and Professional Information Group, and the NHS Screening Programs Trisomy 13 and 18 National Policy Group. Jenny edits the ITA Newsletter, helps to write the ITA booklets, and is the webmaster.
Debbie Bruns Ph.D.
I am an Associate Professor in the Special Education program in the Department of Educational Psychology and Special Education at Southern Illinois University Carbondale.
I am also the Principal Investigator of the Tracking Rare Incidence Syndromes (TRIS) project which aims to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families. My introduction to rare trisomies occurred in the early 1990’s when I had two preschool aged girls in my classroom with full trisomy 18 or Edwards' syndrome, and a four year old in another classroom at the same facility. In my search to learn more about the condition, I found only autopsy photos. All three girls had cardiac defects, respiratory and feeding difficulties. Yet, each had a unique personality and varied preferences for activities and interactions with classroom staff. This interest continued during my doctoral studies when I joined several rare trisomy related listservs. The impetus for the TRIS project was born from reading about parents’ experiences on behalf of their children. The project officially began in February 2007 and continues to grow. TRIS project data has been disseminated through publications and presentations as well as through personal contacts with parents. TRIS project has also collaborated with several rare trisomy organizations such as SOFT USA and Noah’s Never-ending Rainbow. |
Siri Fuglem Berg MD Ph.D.
I was working as an anesthesiologist when in my fourth pregnancy, my daughter Evy Kristine was diagnosed with full trisomy 18. I stopped reading medical articles about this syndrome and concentrated on seeking information on the internet from families who had these children.
The various support groups I found were of immense help, and one woman shared her birth plan with me. Reading all these stories helped me to make the best of my pregnancy and Evy’s short life. Termination of the pregnancy was the only solution our physicians offered. What followed was less than satisfactory. They treated my daughter as a non-person. They knew very little about trisomy 18, and even less about how these children truly are. With hindsight I see that they misguided us in many ways, and we were refused even minimal care for our daughter. Monitoring was withheld during delivery and a C-section, and we had to fight for CPAP and tube feeding. Evy lived for three days, the most beautiful and heart-breaking days in my family´s life. Both my husband and I are physicians, and after our daughter died I established a Norwegian website www.trisomi18.com to support families in similar situations. I have worked to raise awareness of trisomy 18 and trisomy 13 among physicians and the general population. My narrative has been published in two scientific papers and I have written a book about my experience titled ‘Evy Kristine – A Beautiful Journey’. I am currently working as a researcher at Innlandet Hospital Trust, Norway. My focus is pediatric bioethics, including studies on trisomy 18 and 13. I am honored to be part of ITA. It is easier to accomplish results when working together. |
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