One of our members, journalist Olivia Gordon, has written a moving book about her son’s diagnosis of Noonan syndrome when he was a baby in the neonatal unit. The First Breath is a medical memoir crossed with a popular science book about how doctors save the sickest babies, and Olivia’s family’s story runs through it, with Noonan syndrome playing a big part (and all the things like surgery, neonatal care and developmental issues that often go with NS). The First Breath is published by Pan Macmillan and available in all good bookshops or on Amazon Smile (don’t forget to select Noonan Syndrome Association!) https://smile.amazon.co.uk/First-Breath-Moder…/…/ref=sr_1_1…

Olivia Gordon says:

My amazing son with Noonan syndrome is eight, and thankfully now physically well, though he does has various difficulties which affect our whole family’s life.

I’ve spent the last couple of years writing a book all about an experience all of us parents share. About what it’s like to have a child diagnosed with Noonan syndrome, a genetic condition about which so little, as yet, is understood.

My book, The First Breath, is about how doctors and nurses save the sickest babies. As part of this, I tell my whole story of becoming a first time mother, to a baby who was diagnosed soon after birth with Noonan syndrome.

It’s a story that many of us share, of a pregnancy filled with red flags, of giving birth prematurely, to a baby who was critically ill. Of months spent in a neonatal unit, of one stomach and heart operation after another during infancy, of developmental delays and the differences and difficulties children can have as they get older.

In The First Breath I have written a lot about Noonan syndrome, not only about how overwhelming I personally found the diagnosis and how I came to embrace it. But also about the history of how it was discovered back by Jacqueline Noonan in 1962, how research on it developed with genetic testing over the last few decades, and what exactly, for example, PTPN11 actually means!

I even mention the first families day I came to – the opportunity to meet others with Noonan syndrome has been amazing – and how that first experience surprised me and taught me things I didn’t know before. I celebrate the extraordinary bravery and neurodiverse brilliance of our children and also of course adults with Noonan’s, and our NHS which so many of us have to thank for our children’s lives.