Parenting Matters: Parenting a child with, or at risk of, genetic disorders

Many adopted and looked after children experience particular health issues or other difficulties, sometimes due to their early experiences of loss and lack of care. This book focuses on genetic disorders. If you are looking to adopt a child, this guide will give you practical and realistic information on what this condition may mean for your child, along with their symptoms, prognosis and treatment.

This book provides expert knowledge coupled with facts, figures and guidance presented in a straightforward and accessible style.

Two adopters also describes what it is like to parent children with genetic disorders, sharing their parenting experience and offering useful advice.

This book is part of CoramBAAF’s Parenting Matters series which explores many of the health conditions commonly diagnosed in looked after children.

See more titles in this series.

Who is this book for?

A useful book for adopters, those thinking about adopting, foster carers, social work practitioners and all those involved in the care of looked after children. The combination of expert information and first-hand experience will help readers gain knowledge and understanding and make informed decisions.

What you will find in this book

The first half of the book examines a range of genetic disorders and how they may pass through families, what can be done if a child has a genetic disease, what to consider if their parents develop a genetic disease, and issues around genetic testing of children, with particular focus on adoption.

In the second half, adopters describe their experiences of parenting children with genetic disorders, and how this affected, and continues to affect, day-to-day family life.

‘And here we are, almost five years later, very proud parents of our amazing daughter, whom I’ll call Taylor. She has long blonde hair that falls naturally into beautiful ringlets, intense blue eyes, a smile and a giggle that would make the sun shine…She is also generous, kind, empathetic, funny and has Multiple Pituitary Hormone Disorder. She does not grow, feel hunger, cannot heal herself or maintain her own blood sugar. She takes medical three times a day and injects growth hormone every night, and will do so for the rest of her life.’  Dorothy Marsh

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Author

Dr Peter Turnpenny is Consultant Clinical Geneticist at the Royal Devon & Exeter Hospital, and Honorary Associate Professor at the University of Exeter Medical School. In 2003, he became the lead author for the established textbook, Emery’s Elements of Medical Genetics, and the 13^th edition (2007) won the BME Student Textbook Award for 2008. From 2011-13, he was President of the Clinical Genetics Society.

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