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!

Autism Acceptance Week

Autism, in a similar way to the congenital heart diseases that we are involved in, is a hidden disability – you can’t tell that somebody suffers from it from their image. This is something that people, particularly children, struggle to understand, which means that autistic people are frequently misunderstood, and that nobody is able to tell or help when they may require support with things like communication and using their imagination.

You can see how, just like a heart disease, these factors lead to awful consequences for children; having to sit out of events, feeling overwhelmed and unsure, and struggling to find others that understand. Autism Acceptance Week is a two-pronged fork that seeks to tackle problems like the ones mentioned: not only is there a huge effort in schools to provide leaflets and presentations about the issue and spread awareness and understanding, but there is also a big push with regards to fundraising for things like research and support groups.

While the week is great for drawing attention to the issue, and that of similar illnesses, the battle does not stop there. We thus encourage you to be considerate and try to help out in any way you can not just this week, but throughout the year. It could be a small monthly donation, or even something as simple as putting posters about charity events and raising awareness in the staff room at work – often, people with hidden illnesses can be helped out a lot just by people being aware about simple techniques to ease their difficulties: for autism, it could be that people just need a bit more space and time, or that they would really benefit from having somebody agree to be their buddy for a social event.

Below are some easy and effective ways for you to help people with hidden diseases like autism and congenital heart diseases:
-Pin a poster up in the staff room –https://dy55nndrxke1w.cloudfront.net/file/24/P-t5TW6P-rU9lgEP-qLRPialHu/Chris%20Packham%20Workplace%20Awareness%20sheet_20220228%20%281%29.pdf

-Join Heart Heroes’ Give Hope campaign –https://heartheroes.co.uk/givehopedonate/

-Buy a gift for a loved one from a charity’s shop – https://heartheroes.co.uk/shop/
-Share a short video with your workplace or school –https://m.youtube.com/watch?v=4qYAuDuRDyM

We hope you get involved!

Autism Acceptance Week, which runs from the 28th March to the 3rd of April this year, has just celebrated its 60th anniversary, and as the week draws to a close it’s important to think about how it’s message can live on through our daily actions.

Autism, in a similar way to the congenital heart diseases that we are involved in, is a hidden disability – you can’t tell that somebody suffers from it from their image. This is something that people, particularly children, struggle to understand, which means that autistic people are frequently misunderstood, and that nobody is able to tell or help when they may require support with things like communication and using their imagination.

You can see how, just like a heart disease, these factors lead to awful consequences for children; having to sit out of events, feeling overwhelmed and unsure, and struggling to find others that understand. Autism Acceptance Week is a two-pronged fork that seeks to tackle problems like the ones mentioned: not only is there a huge effort in schools to provide leaflets and presentations about the issue and spread awareness and understanding, but there is also a big push with regards to fundraising for things like research and support groups.

While the week is great for drawing attention to the issue, and that of similar illnesses, the battle does not stop there. We thus encourage you to be considerate and try to help out in any way you can not just this week, but throughout the year. It could be a small monthly donation, or even something as simple as putting posters about charity events and raising awareness in the staff room at work – often, people with hidden illnesses can be helped out a lot just by people being aware about simple techniques to ease their difficulties: for autism, it could be that people just need a bit more space and time, or that they would really benefit from having somebody agree to be their buddy for a social event.

Below are some easy and effective ways for you to help people with hidden diseases like autism and congenital heart diseases:
-Pin a poster up in the staff room –https://dy55nndrxke1w.cloudfront.net/file/24/P-t5TW6P-rU9lgEP-qLRPialHu/Chris%20Packham%20Workplace%20Awareness%20sheet_20220228%20%281%29.pdf

-Join Heart Heroes’ Give Hope campaign –https://heartheroes.co.uk/givehopedonate/

-Buy a gift for a loved one from a charity’s shop – https://heartheroes.co.uk/shop/
-Share a short video with your workplace or school –https://m.youtube.com/watch?v=4qYAuDuRDyM

We hope you get involved!

VIP Cinema Experience for Heart Hero Family!

The Heath family are just one of the 715 families that children’s health charity Heart Heroes supports, and recently they were lucky enough to road test a VIP private cinema experience, courtesy of Digital Interiors UK, who are based in Kingsholm. 
 
 
Kelly Cornish, founder of Heart Heroes says: “It was incredibly kind of Digital Interiors to offer their amazing services and facilities to one of our Heart families. Heart Heroes helps and supports those who have been affected by childhood congenital heart disease (CHD), and often simple experiences like going for a trip to the cinema aren’t possible for children with complex and serious health conditions. Thanks to Digital Interiors the Heath family had some quality time together without all the distractions of being at home – like unfinished homework or dealing with the laundry mountain in the corner!”
 
 
Digital Interiors are premium SmartHome and Home Cinema specialists with their offices and showroom in Gloucester. Digital Interiors have been installing lighting controls, home automation, audio & video distribution and Luxury Home Cinemas throughout the UK and Europe for over 17 years.
 
Comfy beanbags and a recliner sofa, plus a hamper of luxury snacks were on offer for the Heaths, as well as the chance to enjoy a film together on a top of the range home cinema set up. 
 
 
“As a charity we have built meaningful and long-term relationships with many local businesses and organisations who recognise the value of our work and are keen to support us,” Kelly continues. “We are so pleased to welcome Digital Interiors as the latest members of the expanding Heart Heroes community! We are hoping more of our Heart families can enjoy the VIP home cinema experience for themselves soon.”
 
 
Mel Heath says: “The concerns and worries that come with having a child suffering from CHD never really go away, but luckily Heart Heroes provides a ready-made community which really understands what we deal with on a daily basis. We had such a relaxing time thanks to Digital Interiors, the picture and sound quality was brilliant and it was good to get away and relax for a few hours as a family!”
 
 
Find out more about Heart Heroes at www.heartheroes.co.uk, and Digital Interiors at https://digitalinteriors.co.uk
 
Berwyn Jones from Digital Interiors says “ We have built a stunning 4K Dolby ATMOS home cinema in our showroom which we are able to demonstrate to our clients Monday-Friday 09:00 – 18:00 with private bookings on weekends. It dawned on us that outside of these times it is unused and that it would surely be of benefit for a deserving charity. When we heard about Heart Heroes and the work they do with families affected by CHD we immediately offered our facilities to them. The first Cinema experience went amazingly well and seeing how much joy it brought to the children it became obvious we needed to do this on a regular basis. So now we are more than happy to host regular family cinema nights for Heart Heroes Charity.

International Woman’s Day- making somebody else’s star shine brighter does not dim your own.

A little bit about being a woman and a heart mum…

International Women’s Day is a great annual opportunity to have a think about what it means to be a woman and to think about the women we value in life. 

I am a single mother to a heart hero – a gorgeous, social, happy little boy whose heart didn’t develop quite perfectly in the womb. Women already face challenges in the workplace and in life more generally – the stigma of taking time off work, questions around capability and capacity, even the dreaded monthly visit from mother nature which can make going anywhere or doing anything more difficult.

Being a heart mum and a single mum can amplify this. I can’t share the load of days off with anybody else, and I need a lot more of them than others might. We have appointments at the hospital, more days off sick, and last year a major operation. For that operation, a 5 year old having surgery on his heart, I, his mother, was granted one day of sick leave to be in the hospital with him, and the rest had to come from my annual leave. This is the reality of being a heart mum.

It isn’t all gloom and doom though. We are blessed to be surrounded by a team, nay an army, of remarkable women who uplift me, offer me practical support, and form a huge loving circle for my boy. From his aunty and maternal grandma, to his many adopted aunties, guidemothers, teachers and friends, what we witness day in, day out, is the strength of the female body and spirit. And, most importantly of all, the truth of womanhood – that making somebody else’s star shine brighter does not dim your own.

Written by Heart Mum Erin Hughes