What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…

Read More

The New York Times reports: “Federal civil rights office rejects rationing medical care based on disability or age.” The U.S. Department of Health and Human Services’ civil rights office told medical providers on Saturday that they may not deny medical care to people on the basis of their disabilities or age during the coronavirus emergency.…

Read More

When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

Read More

Birth Plan for Hannah Faith, diagnosed with Trisomy 18 On October 7th 2013, I was 14 weeks pregnant and expecting a call from our genetics counselor to reveal the gender of our third child! Her words, instead changed the course of my life. My child had Trisomy 18. I had never heard of it. But…

Read More

Presented at the 2012 SOFT Conference, St. Louis  Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information.  The result was he completed about 10% of his forty prepared slides. The order of information that follows reflects the questions…

Read More

Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child.  It has been continually updated as new…

Read More

April’s Story “We love her already and will not stop trying to find someone, some facility, who will believe with us!!!” April S, Trisomy 18 and CDH, 02/25/2019, Live 7 weeks, Orrtanna, PA So yay!! We were so excited!!! We’re pregnant with baby 11!!!! Going in for an Ultrasound has always been one of the…

Read More

SOFT was represented at the 2018 ACMG (American College of Medical Genetics) Conference held April 10- 14, 2018 in Charlotte, NC. SOFT Attendee: Dr John C Carey, Medical Geneticist and Pediatrician, Primary Children’s, SLC, UT – SOFT Medical Advisor SOFT member exhibitors: Ann & Frank Barnes, parents of Megan (T18) 1985-2004 Rhonda Yarrington & 3…

Read More

Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are often used to describe trisomy 18 (t18). Would-be parents are strongly encouraged to end their pregnancy when a t18 diagnosis is made. At…

Read More