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

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)

In the intro I talk about Meghan, Duchess of Sussex opening up about her pregnancy. I mention that this is the first time I’ve heard of a member of the royal family talking about baby loss, however I need to correct that – both Sophie, Countess of Wessex and Zara Tindall, the Queen’s granddaughter have spoken out about their own experiences.

If you have any feedback on the show, suggestions for guests or would like to share your story, you can connect with me on Instagram (https://www.instagram.com/footprintsonourhearts/), Twitter (https://twitter.com/skyesfootprints) or email alison@footprintsonourhearts.com. If you enjoy the podcast, please leave a rating or review on your podcast app! You can support the show on Patreon - https://www.patreon.com/footprintsonourhearts