Mum’s book helps children understand son’s poorly heart

A first-time mum, whose baby was born with four separate heart conditions, undergoing surgery at just seven days old, has written a book to help children understand why her son has a scar.

Called Leo’s Heart, the book has been written by Aimee Roberts, from Kington, Bristol, and she was inspired to write it after the experience she, Leo, and fiancé Alex Nicholls have been through.

Leo, now four, has already undergone surgery several times, and faces more surgery as he gets older. This means he has a long scar, from his throat to his navel, and he began to notice this made him different to his friends at pre-school.

Leo, Aimee and Alex have been supported by Gloucester-based charity Heart Heroes, which helps children born with congenital heart conditions, and their families. It is Heart Heroes which has managed to get the book – called Leo’s Heart – into print.

Leo stars in the book, which is all about why he has a scar and why his heart is a little bit different to his friends’.

“I wrote the book because I wanted Leo to understand about his heart,”  said Aimee, who’s a nursing assistant in a care home. “But it’s a really good way to help other children understand why Leo is a bit different, because his heart works differently to theirs. It will also help them see why Leo can get breathless, and he also speaks differently because he has vocal palsy, as during surgery his vocal cords where damaged.”

The book has been illustrated by Andy Stonehouse, who managed to capture Leo and his family.

Aimee said: “Leo’s friend Sam is in the book, and Andy even included our two kittens in the drawings, so it really is personal to Leo. He loves the book and they have a copy at his pre-school.”

Kelly Cornish, who founded Heart Heroes, said: “Aimee had written the book and shared it with us, and we were so impressed we decided to have it published.”

When he is older, Leo faces further surgery to help his heart, which will include a full valve replacement, to treat aortic stenosis, along with bicuspid aortic valve.

Aimee said: “This probably won’t be the last surgery, as the valve won’t grow with him, so will need to be replaced again.” The British Heart Foundation is researching stem cell treatment, to create a valve which will grow with the patient, but this isn’t yet available.

In the meantime, Heart Heroes’ Bristol Hub has just launched a Bristol branch of its #ICan club, for children with heart conditions and their siblings. It gives children the chance to try their hand at everything from drumming to cooking to gardening. Leo has joined the club, and is an enthusiastic member.

The club meets monthly and the next is on May 7, at The Community Hall, Little Stoke Lane, from 9.30am to midday.

Heart Heroes is currently looking for businesses to sponsor transport to take children from the Hub and #ICan club to different events and venues. The Hub is run by Nicola Morris, who is also Heart Heroes’ family support lead at Bristol Royal Infirmary’s cardiac ward. For more information about Bristol #ICan and the Bristol Heart Heroes Hub, or to offer help with transport costs, email nicola@heartheroes.co.uk.

Copies of Leo’s Heart are available from Heart Heroes shop and all proceeds go us!