March is Trisomy Awareness month. I photographed this series of portraits at the SOFT (Support for Families with Trisomy 18, 13 and Related Disorders) conference in Roanoke, Virginia during July 2009. I am trying to raise awareness that while only 10% of these kids survive their first year the ones that do live a rich life. Expectant parents are often told that Trisomy is incompatible with life and I am trying to share their unique beauty through these digital images. These children and young adults do not pose for photographs but can be captured being themselves, living in the moment. Most are non-verbal so I see it as an honor to help tell their stories visually.
Check out Michael Hennessy's story. In 2008 he started his quest to break the world record for running the most Ironmans in a single year. In 2009, he did just that, and more. Support Ironman For Kids.
An interesting report by Kenneth F. Trofatter, Jr., MD, PhD that discusses the possibility of a link between Trisomy 21 and Folate Metabolism. Read More at Healthline.com
My name is Susan Blomstrom and my daughter is Payton, who is the inspiration for Payton's Birthday Bears. Payton was born with Trisomy 13 in August, 2006. I am completing a thesis as part of my Master's degree in Communication Sciences and Disorders at St. Cloud State University, St. Cloud, MN.
No research exists that investigates what we as families with children with Trisomy 13 or 18 want to know and when we want health care providers to give us information. Your responses to the following survey will help determine what recommendations are given to health professionals.
The Survey is now closed. Thank you to all families who participated in this Parental Survey. Your time and offered information are very much appreciated. The results are being analyzed and will be available on this site sometime in Fall 2009.
I would like to share with you one of the most wonderful and worthwhile experiences of my life: my little boy Daniel, who was prenatally diagnosed with trisomy 13 at 22 weeks gestation. My husband and I have experienced first-hand the many hard choices confronting those who receive a difficult prenatal diagnosis, and understand that in many cases, parents are asked to make these choices without accurate information or adequate emotional support. This needs to change. Please share this book with anyone you feel may benefit from reading it, and help to raise awareness of conditions like trisomy 13, and increase support and understanding for parents like us.
Please join us in supporting Michael Hennessey in his adventures as the Ironman for Kids . Michael Hennessey–husband, father, regular guy with a zeal for faith and life is racing Ironmans around the world for those without a voice! His plan is to race as many Ironmans that he can, scheduling permitted, across the globe — possibly a total of 18 in 2008 and 4 in 2009 for children living with trisomy. His organization aims to raise awareness and funds to benefit children's charities around the world!
This article is posted on Living with Trisomy 13 and was originally published in the Hastings Center Report in 2003. It discusses the difficulties parents and doctors face when making decisions regarding their child who has been dignosed with a disorder that is termed fatal, like Trisomy 13 and 18, yet has survivors.
"I think this is an excellent tool for parents to increase the effective communication between them and their healthcare team. A definite must read!" Bess Raulerson, President of Hope for Trisomy.
Felice E. Miller, Ph.D. is a Clinical/Consulting Psychologist in private practice and faculty of UCLA Schools of Medicine and Pepperdine University. As expert in the field of interpersonal and intercultural communication, Dr. Felice has shared with us some effective communication tips to gain control when navigating in the health care system.
Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns
This is the most recent American Academy of Pediatrics statement about noninitiation or withdrawal of intensive care for high-risk newborns.
Dr. Christine Nelson (Our Helpful Pediatric Hospitalist) states: I would see it as a resource if someone was at a standstill with their birthplan. It clearly states that the parents should have the most important say when the outcome is questionable, but it still leaves an open "place" when it comes to deciding what is "futile." Not perfect, by any means, but probably as good as a policy statement can be.
PRESS RELEASE Children's Hospital of Philadelphia (CHOP) - "We're Expecting! Opening in January 2008, Special Delivery Unit at Children's Hospital to Be First-of-its-Kind Service for Pregnant Mothers with Birth Defects in Fetus. World's Leading Fetal Surgery Experts Will Offer Seamless Services: Prenatal Diagnosis, Treatment, Delivery and Postnatal Care." Check out the full article on the CHOP website for more information.
An amazing video story about the life of a precious little boy named Eliot who was born with Trisomy 18. His father narrates this touching and incredible heartfelt story told in letters. Check out the video.
For Parents 
An interesting report by Kenneth F. Trofatter, Jr., MD, PhD that discusses the possibility of a link between Trisomy 21 and Folate Metabolism. 
