What is the right way to tell parents that their newborn child has Down syndrome? Here are the guidelines developed—after years of mistakes and suffering—by five institutions deeply committed to this work:
- Armonia di qualità diverse;
- Associazione bambini Down;
- Università cattolica del Sacro Cuore, Roma;
- Università «La Sapienza», Roma;
- Università degli Studi di Perugia.
After briefly reassuring the mother about the delivery, plan the timing, setting, and manner of the conversation with care.
Place the mother in a quiet room and give her the baby as soon as possible.
Help the mother and child bond. Include family members present.
Coordinate with colleagues from other departments—obstetrics, pediatrics—so that one clear, consistent message is delivered together, with adequate time, in a place where you will not be interrupted.
Deliver the confirmed diagnosis with the child present, to both parents and close family members at once. Use simple, clear language.
Answer all questions fully. Do not dwell on physical signs or express regret.
Be honest about limitations, but emphasize what the child can do. Long-term prognoses are not helpful.
Tell the family about support services, specialist centers, and parent organizations available to them.
Help arrange contact with these resources so the family does not withdraw into isolation.
Meet the family's reactions with compassion, offering support in every way—especially emotional and social.
Discharge mother and baby together.
Follow up with a phone call after they leave the hospital.