#44 Edwards’ Syndrome and the Importance of Language around TFMR with Jessica

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In Episode 44 of Footprints on our Hearts, guest host, Chainie Jackson talks to Jessica about her son Hector who was diagnosed with Edwards’ syndrome. As well as talking about Hector, they discuss the language used to deliver bad news and how this can affect parent’s perception of what their options are particularly around medical terminations.

In the interview, they talk about:

  • Jessica’s pregnancy with Hector and finding out he was high risk for Edwards or Patau syndrome (7:13)
  • Why the label “incompatible with life” doesn’t always give parents the full picture (9:32)
  • Finding out Hector had a high probability of Edwards’ syndrome (17:04)
  • Deciding not to terminate her pregnancy and battling with medical professionals who had written him off (28:42)
  • Finally getting support for Hector from a consultant who treated him like a baby (37:50)
  • Finding out that his placenta was failing and having to change his care plan (40:24)
  • Having an emergency delivery and spending three hours and four minutes with Hector before he passed away (44:24)

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