Welcome medical and healthcare providers

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The FOUNDATION is here to provide support, resources, and training for medical and healthcare professionals.

After 20 years, mothers can still recall with nearly 82% accuracy the first conversation about Down syndrome.

WHO should be present?  

• Mother and father present 

• Physician - Both obstetrician and neonatologist, if possible 

• Nurse 

• Social Worker 

WHEN should you share the diagnosis? 

• Mothers want to know as soon as possible, even if the diagnosis is not confirmed 

• Parents already know that there is something different about their child 

WHERE should the discussion occur? 

• Private room 

• No other medical personnel; no visitors 

• Mother and father/support person 

• Provide parents a private place to be alone immediately after disclosure 

WHAT information should be shared? 

1. Basics  

• What is Down syndrome? 

• What is its cause? 

• What does it mean for the family, in practical terms?  

2. Balanced, realistic information 

• Resources 

• Parent-to-parent mentoring 

 3. Limit information to the most immediate or common medical conditions:  

• Cardiac defects, mild/moderate intellectual disability, hearing problems, ear infections.  

The Importance of The Conversation 

What parents remember: 

• Physicians and nurses offering congratulations 

• The first words that healthcare providers used, which set the tone for the rest of the conversation.

• We encourage all medical professionals to utilize people-first language when speaking with or writing about their patients with Down syndrome. Example: You do not have a Downs patient; you have a patient with Down syndrome. Learn more about the importance of People First Language here. Putting a person before their diagnosis shows respect and empathy and helps alleviate diagnostic overshadowing.