Trisomy 18 & 13 Care Is Changing | Lurie Children's Trisomy Care Collaborative | Talking Trisomy

In this episode of Talking Trisomy, host Nick Holladay (President of SOFT) and co-host Dr. John Carey sit down with two of the leading voices in Trisomy 18 and Trisomy 13 care — Dr. Natasha Henner and Grace Knowles from the Lurie Children's Hospital Trisomy Care Collaborative in Chicago. Dr. Henner is a neonatologist and pediatric palliative care physician at Lurie Children's and Northwestern, and interim Division Head of Pediatric Palliative Care. Grace Knowles is a perinatal palliative care nurse practitioner and co-leader of the Trisomy Care Collaborative alongside Dr. Henner. Together they founded the Lurie Trisomy Care Collaborative in 2023 — a multidisciplinary team bringing together every major medical and surgical specialty to improve care for families navigating a diagnosis of Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), and related rare chromosome disorders. In this conversation we cover: Why Trisomy 18 and Trisomy 13 needed their own dedicated care team How the medical narrative around these conditions is changing — and why What multidisciplinary, family-centered care actually looks like in practice The difference between palliative care and hospice for trisomy families How families outside of Chicago can access second opinions and resources What is next for the Trisomy Care Collaborative at Lurie Children's 📥 Download the TCC Family Guide — English: https://trisomy.org/wp-content/upload... 📥 Descargar la Guía en Español: https://trisomy.org/wp-content/upload... 🌐 Learn more and find support at trisomy.org Whether you are an expectant parent who just received a diagnosis of Trisomy 18 or Trisomy 13, a bereaved family, a medical professional, or someone who wants to understand these conditions better — this episode is for you. #Trisomy18 #EdwardsSyndrome #Trisomy13 #PatauSyndrome #Trisomy #TalkingTrisomy #SOFT #rarechromosomedisorders #trisomy9 #trisomyCare #PalliativeCare #Trisomy9