BLOGS
Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related...
Attitudes Toward Hypothetical Uses of Gene-Editing Technologies
The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views...
Common Problems of Babies with Trisomy 18 or Trisomy 13
A consistent list of problems and concerns has been reported by parents through the years. Viability of their newborn is their first concern, followed by decisions about management of care. Feeding difficulties and constipation are common, often lifelong problems; care of infants with these issues follows below.
Membership & Diagnosis Analyses
Note: Some Medical Professionals have children with trisomy so the "Families" count will not equal the Total Count in the first display.
International Trisomy Support Groups and Organizations
Provision of information and links does not constitute SOFT USA's endorsement of any group. The International Trisomy 13 and 18 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes...
If you ask me, I will tell you
I know we might not have known each other long. Maybe you’re a friendly cashier, or someone buying the same grapes as me at the grocery store. Maybe we’re taking turns on a machine at the gym, or we just met at a professional development opportunity. We make friendly...
Video: Routine Health Care for Children with Trisomy 18
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...
Medical Providers May Not Deny Medical Care Based on Disabilities
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...
Grief Shared is Grief Lessened
How to Support a Parent in Grief Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome “People told us that having him would be the hardest thing we ever did. But they were wrong. The hardest part is not having him.” Patricia Farmer, Joey,...
