Box 1.

Additional participant information

Melanie’s son, Ned, was born after five miscarriages. Ned is 7 years old and looks relatively well, but Melanie knew that something was not right from birth. She struggled to get anyone to acknowledge the problems that Ned was having for the first few years of his life. Melanie and her husband have decided not to have any other children. Lucy has two daughters. Her youngest daughter, Daisy, is 19 months old and has an undiagnosed disorder. Lucy knew that something was wrong during the pregnancy as Daisy stopped moving. Lucy’s partner is keen for another child, but she has decided not to have any more children. Judy’s son, Callum, was conceived via IVF. She noticed that Callum was delayed in comparison to his peers at approximately 4 months old and had been searching for a diagnosis ever since. Although Judy and her husband decided not to have any more children at first, they started to consider having another child as Callum’s health was improving. A diagnosis for Callum was recently identified. Fiona was told that her son, Nathan, would not survive and was advised to terminate the pregnancy. Fiona decided to continue the pregnancy and Nathan is now 10 years old, exceeding all expectations. Fiona decided not to have any more biological children but did however adopt a child with Down syndrome in order to expand her family. Shelly has two sons. Her youngest son, Rory, is 5 years old and has a range of health problems but no overall diagnosis. Shelly is no longer with her sons’ father but has a new partner. Shelly would like to have another child.