Senator Ashley Moody on Infant Denied Heart Transplant Due to Down Syndrome

The Story of Baby Zion

• 👶 Baby Zion Sarmento was born in Florida in 2021 with Down syndrome and a heart defect.
• 💔 After 40 days in the NICU, Zion passed away at 16 weeks old, having been denied a heart transplant.

Systemic Barriers in Organ Transplants

• 📊 The National Down Syndrome Society reports that only 52% of people with disabilities receive a referral to an organ transplant specialist.
• ⚠️ Nearly half (43%) of pediatric transplant centers consider intellectual disabilities a factor against transplant, citing assumptions about quality of life.
• 🚫 Close to two-thirds of transplant centers have reservations about providing kidneys to individuals with even mild intellectual disabilities.

The Charlotte Woodard Act

• 🌟 Charlotte, a woman with Down syndrome who received a successful heart transplant at age 22, is the namesake of a bipartisan bill led by Senator Moody and Senator Maggie Hassan.
• ✅ This bill, which passed the House unanimously, aims to prevent discrimination in organ transplant evaluations based on disability.
• 🎯 Senator Moody is committed to getting this bill passed to honor Baby Zion and others like Charlotte.

Expert Testimony on Discrimination

• 🧑‍⚕️ Dr. Karp shared the story of Joe Idol, a man in his mid-30s with Down syndrome who received a successful combined heart and liver transplant.
• 👍 Joe Idol is now thriving, demonstrating that individuals with Down syndrome can lead full lives after transplants.
• ⚖️ Dr. Karp emphasized that while complex cases require careful consideration, discrimination against transplant candidates with Down syndrome is unacceptable for those with a good chance of survival.
• 🏥 Vanderbilt's transplant center has a non-discrimination policy that explicitly covers transplant evaluations, with regular discussions and awareness among staff.