Resources
Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? 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…
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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 disorder face. Managing your child’s bowels becomes a…
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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.
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Membership & Diagnosis Analyses
Membership – by Diagnosis (MOS = Mosaic) Trisomy_18 Trisomy_18MOS Trisomy_13 Trisomy_13MOS Trisomy_9 Trisomy_9MOS Other Total 763 70 487 63 1 20 274 1,678 Membership – by Member Type Total Supporter Medical_Prof Families Editor Admin Others 2,294 115 273 1,900 1 5 1 Note: Some Medical Professionals have children with trisomy so the “Families” count will…
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International Trisomy Support Groups and Organizations
Provision of information and links does not constitute SOFT USA’s endorsement of any group. The International Trisomy 18/13 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively). The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate…
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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 banter, which I’m probably not enthused…
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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 Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
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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, Trisomy 13 “If you are lucky enough to have not…
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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 “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…
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