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A mother’s perspective on Down syndrome and diagnosis

A series of thirteen video clips, relevant to health professionals, featuring Melanie Mora and her family. Mel is mother to three boys – Jamie, Ryan and Ethan. Her middle son Ryan was diagnosed post-birth with Down syndrome.

The first nine video clips feature Mel in an interview, introducing her family and talking about her experience of receiving an unexpected post-birth diagnosis of Down syndrome for her second son Ryan.

The last three video clips feature an edited version of Mel’s Paediatric Update presentation,13 April 2011. All headings link to the associated clip on YouTube.

  1. Melanie Mora introduces her family
  2. Mel’s experience of a post-birth diagnosis of Down syndrome
  3. The first 24 hours after diagnosis
  4. Being positive
  5. How others see Ryan
  6. The challenges
  7. Mel describes her parenting style
  8. Impact on Mel and her husband as a couple
  9. The impact on siblings
  10. The importance of looking after yourself
  11. A mother’s perspective on Down syndrome and diagnosis
  12. Mel’s suggestions for health professionals delivering unexpected news
  13. Other parents’ experiences of receiving an unexpected diagnosis

Acknowledgement

Video links included with the permission of Kidshealth. Kidshealth is a joint Paediatric Society of New Zealand and Starship Foundation website, providing accurate and reliable information about children’s health for New Zealand parents and caregivers.

Welcome to Holland

We love this piece of writing by Emily Perl Kingsley. Emily is a writer and the mother of Jason who was born in 1974 with Down syndrome.

Read excerpt (PDF)»