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!!

 

Who’s behind Heart Heroes

Hello and welcome to our page. Heart Heroes was set up in 2018 to support children living with heart conditions and their families within the South West. We wanted to support by arranging events and get togethers so that families can come together to support each other. Having had a family member with CHD who sadly had passed away at 10 months old, Kelly the founder felt she wanted to give back to all the amazing heart children and families.

Kelly voluntarily oversees the running of the charity along with the team Zoe, Pete, Sarah, Jo, Rose, Amy, Gemma, Nicola and now Ella. We are based in Gloucester but have plans for a Bristol and Wales Heart Heroes hubs, all very exciting. We work closely with Bristol children’s hospital, St Michaels Bristol and the CHD Network South west. We’ve recently had a joint project with BCH and St Michaels creating Heart Patient journey folders. Also we have funded some new iPads along with iTunes vouchers for the children whilst on Dolphin ward.

You can keep up to date and receive our monthly newsletter by registering here https://heartheroes.us3.list-manage.com/subscribe?u=b6394e19e780a7dcabd7905eb&id=2b850e51ad