Managing your child’s care


  Care of the Infant and Child with Trisomy 18 or Trisomy 13,4th edition; 2018, a free SOFT E-book by Barnes, Carey


•  Video:   EVERY CASE IS UNIQUE: Delivering optimal medical care to babies born with Trisomy 13 and Trisomy 18.  Dr. Martin McCaffrey speaking at the Perinatal Conference in Dublin, 2016

Constipation 101 – a video presentation about understanding constipation in children, hosted by Terre Krotzer at Trisomy Talk.  Here is a transcript of the Constipation 101 video presentation.

When in the Hospital  by Ann Barnes (life support orders & more)
Helpful Information Equipment, medical/surgical info, Medicaid Waiver, legal aid, preemie clothes & more.
• About Palliative Care, Perinatal Palliative Care and Hospice  
by Ann Barnes
Medical Care Issues:  from The Complex Child e-magazine

Medicaid, Katie Beckett, TEFRA, etc.
Medicaid Waiver information by state

 Surgery and Growth
Surgery Information and Growth Charts (SOFT data)
Hope for Lilliana (video about her cardiac surgery)
• Congenital Heart Defect: corrective surgery   (link)

The Complex Child E-Magazine covers many subjects of interest to families having children with chromosome conditions and has an extensive archive of past articles.

Workshop Summaries (from past conferences)
Helpful Organizations
• Helpful Information
 Wills, Trusts, and Estates 
Glossary of Genetic and Medical Terminology
 Contact SOFT Headquarters
U.S. & Canadian Chapter Chair Contacts
 Other Trisomy 18/13 Support Groups

• International Support Groups & Contacts 

Go here to register or to update your SOFT registration.   Click here to
visit the SOFT Publications Library.