Heart Hero Esme

Back in August Heart Heroes funded little Heart Hero Esme an Ipad to use whilst she has her treatment for Leukaemia and for during her hospital stays. This is just one example of what we fund as a charity.

Today we received this message and pictures from Esme’s mum….

‘I know I’ve said it before but….. Thank you 🙏 thank you 🙏 thank you 🙏 your kind and thoughtful gift has kept Esmé occupied, made her smile, got her through some tough times and soothed her when she was at her worst. From her favourite shows and music to the sweet soft lullaby app I’ve downloaded for her it’s all absolutely amazing xxxxx’

If you’d like to donate to the support we give then please ask us about becoming a regular giver or donate.

Every donation truly makes a difference!

To those who give regular, thank you from the bottom of our hearts 😘

Tales Of The Heart

Working together with Heart Families South West we have now received these amazing books. Heart families shared their heart stories with us that have now been put into print thanks to Onymous for the amazing design work of the book and www.taylorbros.co.uk for the quality printing.

These are books of hope, the future and will be an amazing resource 💖

“Fingers crossed for the future because Finley has definitely proven to everyone that he is a strong little fighter”

At the back of each book there is a section titled looking back…things I wish I’d of known…here is one

‘Picu is the most scariest of places but the nurses & doctors are absolute angels. They’ll make you laugh when all you want to do is cry’.

Available to buy on our shop…

Heart Heroes Wales Hub

Meet Ella.

Ella will be running our Wales Heart Heroes Hub.

I decided to get involved with Heart Heroes, in particular their Welsh Hub as I myself have congenital heart disease. Recently I was fortunate to have a baby boy, who was born without CHD, it was a 1 in 10 chance of him being born with CHD. I realised how scary that must be for parents, having their child diagnosed with such an unpredictable illness that could never be cured. I wanted to give something back and support a good friend with her charity, Heart Heroes. On speaking to Kelly, we quickly realised the lack of provision within Wales, I live in Bridgend so have offered to help run the Wales Hub, where I run coffee mornings and will be looking to organise fundraising events.

 
Heart Heroes were not around when I was a child and I firmly believe had myself and my family had their support from a young age I would have coped better through my childhood and into my adulthood, as I would have had friends in a similar position to me, people to share my emotions and worries with. Instead I now struggle with post-traumatic stress disorder from all of my procedures and so I hope that by helping families to connect through Heart Heroes that we can reduce the impact that CHD had on everybody’s life.

Heart Journey

‘This is Finley, he is 6 months old and has spent the first 5 months of his life on PICU in Bristol Children’s hospital. I had a normal pregnancy, only issues we had were reduced movements so when Finley was born everything seemed fine. That was until a few hours later when the midwifes noticed Finley was turning grey. They took him away and did some observations on him, his sats were below 50%. Hours passed by before we were told anything but after a while we were told Finley had a heart problem and was being transferred from Swindon to Bristol. They didn’t know what heart condition it was so we didn’t get much information. Myself and Ben were not allowed to go see him for about 5 hours. 

It was such a long wait but then we got taken to see him in SCBU and to talk to the doctors from Bristol who told us he probably wouldn’t make the ambulance ride. By the time we did get to see him he was already in the transport incubator ready to go!

We followed behind in the car and they when we got to Bristol we had to wait in the quiet room where we were told that Finley had TGA. (transposition of the great arteries) Mr Serban Stoica sounded very positive about his surgery so at 4 days old he went for his switch. A surgery which we were told would take 6-8 hours ended up taking 12 hours. Of course very worried we just knew something had gone wrong. After the surgery our surgeon came out to tell us that the switch went well but there were more complications and Finley came out of theatre on ECMO.
 
After 5 days we managed to get him off, though unplanned due to the machine clotting he managed off it better than everyone in Bristol expected. Things were starting to look well he was taken off the ventilator and IV meds were slowly coming off but he would then take a turn and be out back on the ventilator. This happened a few times but he took a bad turn at the end of April where he nearly died. He went down to the cath lab where they discovered that he had no coronary arteries to the left side of his heart.
 
We were told there was nothing to be done for him. We had a meeting with a few consultants, cardiologist and surgeons who told us our options. This was the worst meeting of our lives but then someone suggested stem cells. A few of the faces disagreed with this but we wanted to know more. a surgeon called Professor Caputo came to talk more about this stem cells with us. He explained that it has never been done in the U.K. before for how we need it to be used. It has been used for other things but this treatment would be purely experimental. What he wanted to try was to inject these stem cells into the left side of Finleys heart to help re grow his coronary arteries. There was no question about it, we had to try. So a week later we got the go ahead from the directors of Bristol children’s hospital and the stem cells were on their way.
 
They made it very clear from the beginning that we had no idea what was about to happen, how it would affect him and if it was to work we wouldn’t know about his future. He was in surgery for about 4 hours and came back fine. All went as well as it could have. He was soon making improvements and
There was talks about giving him a tracheostomy incase he didn’t cope of the ventilator but me and Ben wanted to give him a chance and see if he could cope since having these stem cells.He took a very slow wean off of his IV inotropes and his ventilator and within 3 months he was like a different child.
He has made so much progress and he’s happy at home. All of his check ups and perfect and everything seems to be heading in the right direction. So it seems that these stem cells have done exactly what we wanted them to’
We love being asked to share heart journeys and this certainly is an incredible journey .

 
 
 
 
 
 
 
 

Heart Heroes Ella & Sammi

Heart Heroes founder Kelly had a lovely chat with Heart Heroes Ella and Sammi this evening.

Ella is 27,  her heart condition is Transposition of the great arteries and she has had 3 open heart surgeries.

Sammi is 28 and had coarctation of the aorta, narrowing of the pulmonary artery, multiple VSDs and a faulty valve and she’s had 4 open heart surgeries.

Both are mummy’s to two gorgeous boys. Ella and Sammi are doing a Q & A session on Thursday 23rd @ 7.30pm on what it is like growing up with a heart condition ❤️

A lovely surprise for our Heart children

So this weekend Heart Heroes was very excited to be taking 55 Heart Families on a residential weekend but sadly due to Covid this will now happen next year ❤️ Instead we have lots of our heart families joining us for bingo tonight and some will be camping in their garden for the weekend. This is alongside https://facebook.com/events/s/glasthomebury-festival-2020/243621583489596/?ti=icl
 

A huge thank you to JB Event Hire for making this happen. JB will be setting up bell tents with lights, bunting and blow up beds all disinfected to a high standard!! We have been told the children do not know about this so it will be a total surprise!!