RESOURCES
Parenting Resources
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 information has become available and is the only known resource of its kind. The updated book is available here in English (click the cover), Spanish and Portuguese (click the links below). Please feel free to reproduce as many copies as desired (but don’t change any of the text).
Interdisciplinary Care of Children with Trisomy 13 and 18
From the SOFT 2021 Virtual Conference Professionals Panel. Interdisciplinary Care of Children with Trisomy 13 and 18with Dr. Nicole Birge, MD, Medical Director of the Neonatal Intensive Care Unit at...
T13 Families
[pdf id=37798]
Parent-reported histories of adults with trisomy 13 syndrome
Click here to view and download a .pdf copy of this article.
Newborns with trisomy 13 or 18 can benefit from heart surgery
Republished with permission. Infants with the genetic disorders trisomy 13 or 18 are more likely to survive if they undergo heart surgery, a study from researchers at Stanford and the University of...
Trisomy 18 Long-Term Survivors Survey
If your child with Trisomy 18 is or was a long-term survivor (1+ years) please help with this study conducted by the Trisomy 18 Registry.
Aaliyah Pineda – Trisomy 13
Aaliyah's life is truly a blessing. She's our angel. Our miracle baby. A hungry warrior. My baby girl's name is Aaliyah Esperanz and she has trisomy 13. Ummmm. We didn't know anything ahead of time....
Video – Update 2020 on Seizures, Light Sensitivity and Headaches
Dr. Steven Cantrell - Seizures, Light Sensitivity and Headaches From the SOFT 2020 Virtual Conference Dr. Cantrell’s workshop, Seizures, Light Sensitivity and Headaches will review the many triggers...
Tumor Risk and Surveillance in Trisomy 18
Dr. Stephen BraddockTumor Risk and Surveillance in Trisomy 18. Dr. Braddock discusses Wilms tumor and other conditions that a child with trisomy should be monitored for. From the SOFT 2020 Virtual...