♥ 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