From SOFT- What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13

Information After a Diagnosis of Trisomy 18 or Trisomy 13
Pamela J. Healey, Ph.D

The Need for Information at Diagnosis  

For parents newly facing such a diagnosis there is at least a glimmer of hope that their newborn will survive. This reality should be acknowledged by professionals treating their child. There are survivors. Despite the odds, some children with trisomy 18 and trisomy 13 do survive, develop, and become important members of their families. Trisomy 18 and trisomy 13 are not, as has been declared, “incompatible with life”, nor are the syndromes necessarily “lethal conditions”. Survival depends on the particular constellation of malformations resulting from the extra genetic material, the rest of the child’s genetic code, the medical care and interventions an infant, then child, receives in the hospital and at home, exposure and response to viruses, and probably, an element of chance. It is not understood why some children survive. Some with early risk factors and multiple medical crises during childhood, survive into adulthood. READ MORE
Families & Professionals working with Trisomy Families
Searching for the most current and updated information on TRISOMY? 
Go to: SOFT Support Organization for Trisomy 18, 13 and Related Disorders
Families caring for Trisomy Babies and Children can be found on the Facebook Support Group.
www.facebook.com/groups/TrisomySOFT
www.facebook.com/groups/Trisomy13