CONGENITAL HEART DISEASE: Helen and Rory's story

In the autumn of 2022 Helen and her partner Joe were excitedly awaiting the arrival of their first baby, but at the 20-week scan they started down a path they never thought they would be on. A potential issue was picked up with their baby’s heart. Eventually specialist Dr David Lloyd, whose incredible work into foetal heart development is funded by the BHF, would diagnose a condition called Coarctation of the Aorta. This is where the artery that carries blood from the heart to the rest of the body is narrower than normal.

Helen and Joe’s son Rory went on to undergo corrective heart surgery at just five days old. His diagnosis, and the detailed care plan put in place for him before he was even born was made possible by the incredible technology harnessed by Dr Lloyd and his team at London’s Evelina Children’s Hospital. Dr Lloyd uses prenatal 3D ultrasound MRI scans to create incredibly intricate images of a baby’s heart, and it is thanks to this life-changing science that baby Rory is here and thriving today.

On this episode with Sarah Marsh from the BHF, Helen speaks about what it was like for herself and Joe to come to terms with what their baby would need to cope with at just hours and days old. She talks about the realities of what their little family has lived through during the past year, how BHF-funded research was the game-changer for them and how little fighter Rory is doing now.

Helen, Joe and Rory’s family story is one at the heart of the BHF’s Spotlight On campaign. You can find more information here: https://spotlighton.bhf.org.uk/hidden-heart-conditions

As a charity, the British Heart Foundation depends on the generosity of donors to continue carrying out our lifesaving research. If you too would like to donate, you can do so at bhf.org.uk/donatepod

If you've got any questions or concerns about your heart or circulatory health and want to talk with a cardiac nurse on the BHF’s Heart Helpline, go to our website at bhf.org.uk/hearthelpline and you'll find all the contact options there.

And if you’ve got your own heart story, or have any thoughts on this episode, we'd love to hear from you on email at [email protected]

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