Posts Tagged ‘Parenting’
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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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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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, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…
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Workshop: Transition Points in the Trisomy Journey
Transition Points in the Trisomy Journey was a morning workshop led by Joyce Coleman, a Licensed Clinical Social Worker with over 20 years of experience in health care.
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DNRs and Advance Planning for Kids: Everything You Need to Know
In this article, we will go through all the various acronyms, explaining the pros and cons of each type of advance planning order or form, including how each will be interpreted in a variety of settings.
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The Care Book (English, Spanish, Portuguese)
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…
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Health Supervision & Anticipatory Guidance for Infants & Children with Trisomy 18 & 13
The Table below is extracted from the SOFT Trisomy in Review Research Newsletter, first published in 1993 and updated in 2005. It is meant to provide a framework and checklist for medical care, follow up, and screening of infants and children with trisomy 18 and 13. Note in reviewing the Table that precise figures for most…
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