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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.
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...
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...
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...
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....
Trisomy 13 – A Handbook for Families
When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is...
Trisomy 18 – A Handbook for Families
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,...
Important Update Regarding 2020 SOFT Conference
To Our SOFT Family: SOFT is an organization that has always and will always put families first. In light of the arrival of COVID-19 in the United States, the Board of Directors convened to discuss...