I ask the Government to conduct a formal review and consideration of updates to the guidance parents receive if their baby is suspected of or diagnosed with Patau’s syndrome, to ensure they are always accurately informed that some children may survive Patau’s syndrome, and that outcomes may vary.
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I was personally told my baby would not be compatible with life. I believe parents shouldn't be given any impression that the condition is universally “incompatible with life,” as there are some children who may survive beyond birth and in rare cases for longer.
The review should examine how medical professionals communicate any uncertainty and present choices to parents so they are always clearly informed and can make fully informed decisions. It should consider the emotional and practical support they're offered after diagnosis, ensuring families always receive balanced, evidence-based information and support regardless of their decisions.