BLOGS
Grief Shared is Grief Lessened
How to Support a Parent in Grief Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome “People told us that having him would be the hardest thing we ever did. But they were wrong. The hardest part is not having him.” Patricia Farmer, Joey,...
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...
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...
Triage guidelines for hospital admission during crisis
A message from Dr. John Carey, SOFT Medical Advisor Greetings to Families and Friends of SOFT, At this unreal time, let me say first that I share with all the intense and widespread concerns and anxiety engendered by COVID-19. Despite working every day at home now,...
Preparing for Hannah Faith – A Birth Plan
Birth Plan for Hannah Faith, diagnosed with Trisomy 18 On October 7th 2013, I was 14 weeks pregnant and expecting a call from our genetics counselor to reveal the gender of our third child! Her words, instead changed the course of my life. My child had Trisomy 18. I...
Important Update Regarding 2020 SOFT Conference
To Our SOFT Family: SOFT is an organization that has always and will always put families first. In light of the arrival of COVID-19 in the United States, the Board of Directors convened to discuss appropriate actions that should be taken in order to keep our members,...
A Message from the SOFT Medical and Scientific Advisory Board Regarding Covid-19
To Our SOFT Family: You likely know by now that the 2020 SOFT Conference will be postponed until July 2021 due to concerns for our health related to the coronavirus. While updates on COVID-19 (coronavirus illness) pandemic are publicized on the TV news regularly and...
Cardiac Surgeries and Procedures Reported to SOFT, Arrayed by Diagnosis
As new surgeries are reported, SOFT updates this table with cardiac related surgeries and procedures. This data shows the number of surgeries performed by type of cardiac procedure and by the diagnosis of the child. Grab the slider bar at the end of the report to...
