When Martin and Leanne Watts were told their son had a heart defect their world was turned upside down – only to be told a year later, his baby brother had CHD too.

Eight years on, both boys have had open heart surgery and the whole family want to say thank you to the people who saved Harley and Joey’s lives…

Mum, Leanne tells us all about what inspired her family to fundraise for CHSF…

In 2012 our lives were turned upside down when we were told our little boy, Harley, had SupraValvar Aortic Stenosis and pulmonary branches stenosis. The severity of the condition was incredibly high, and the future looked bleak. There were no options to us back then and we were told nothing could be done.

Then in 2013 Joey entered our lives. This was a time we should have been overjoyed, but yet again came the unbearable pain. Our little boy also had the same condition as his brother!

We were advised both boys were at risk of sudden death and probably wouldn’t live to be three years old.

As you can imagine, the pain we felt as a family was unbearable, but we never let that stop us. The boys were bought up with their other siblings doing what children of their age did – with limitations obviously.

Fast forward to 2018, we were told Joey needed Surgery in the very near future. The chance of his survival was 1 in 10 due to the huge risk of anaesthetic but without the interventionalists and surgeons trying, our little boy’s life was hanging by a thread.

Both Harley and Joey had open heart surgery at Leeds

Harley and Joey with their heart surgeon Mr Osama Jaber at the opening of the Hybrid Theatre Dec 2019

CHSF helped to fund the new Hybrid Theatre at Leeds Children’s Hospital

In May 2019 Joey underwent his surgery and it was a great success because of the new Hybrid Theatre at Leeds Children’s Hospital, everything being under one roof and of course all the amazing staff in PICU and on Ward L51. Our boy’s future looked brighter.

Without the amazing Hybrid Theatre, this surgery wouldn’t have been possible and was only because of the wonderful work that Children’s Heart Surgery Fund did to make the theatre a reality.

Eight months later, Harley was to have the same surgery, with the same chances of survival – and he too made a fantastic recovery.

The support we received from the Children’s Heart Surgery Fund was phenomenal. Not only did the theatre that they raised money for save our boys lives but they also made sure we had accommodation to stay in during our stays in hospital, taking away took away financial pressures. They provided both boys with a Katie Bear teddy, medal and certificate – and I believe this aided their recovery. We will forever be indebted to Children’s Heart Surgery Fund for the amazing work they do!

This was when me and Fiona Harper decided we would plan a Halloween Spooky Sponsored Walk to try and raise some money for a great cause so close to our hearts – and we asked our football community to get involved and help us in our plight.

Even Katie Bear got spooky for the Halloween walk!

Children in football team bubbles joined in with the spooky walk!

Martin Watts who runs Tickton Pumas (Harley & Joey’s dad) and Lee Jenkinson were keen to get involved, along with James Leebetter who runs Tickton Hurricanes (Fiona’s Partner). They asked their team members if they would participate and the response was fantastic!

We ran a prize for best fancy dress costume too which made the day a little more fun. Emily Blake who helps run the admin page for the Pumas was also extremely keen to help.

The Halloween walk was fantastic, and a great success and we raised a super amount of money for CHSF.

I’m so grateful to everyone who participated and sponsored us that day as we can now give a little back to help others – just like Children’s Heart Surgery Fund helped us ❤

And we are so grateful to the Watts Family, all who took part on the day and of course all who donated to the Halloween walk.

You all raised an amazing total of £2033 – an incredible amount of money to help the Leeds Congenital Heart Unit, our heart warriors and their families #BecauseofYou

There’s a Harley and a Joey under there somewhere!!

Because of you and your amazing fundraising, CHSF are able to fund INR home testing kits for our heart warriors.

These kits reduce stress and allow a patient to test their blood levels themselves at home without missing school for hospital appointments.

Rebecca tells us all about her daughter Bella’s journey with congenital heart disease so far and the difference your donations have made to their family…

Isabella is six in December. She has Hypoplastic Right Heart syndrome which means she has no right ventricle. She has spent many nights in hospitals due to heart procedures. From open heart surgeries to cardiac catheter procedures and MRI scans.

All the heart surgeries Bella has had are life prolonging surgeries. Before she was born we were made aware that she would need three stages of heart surgery. But the first two stages she needed repeating.

She has just had her final stage in July this year and the difference in her is amazing. I never realised just how much she had deteriorated before this surgery until she recovered from the Fontan and she could run up a flight of stairs and it hardly take her breath. Before the surgery I would have to carry her up the stairs.

Bella has had many blood tests and each one has been traumatic for her. The older she is the harder blood tests are. The last few blood tests were horrendous and emotionally draining for both her and me.

Bella in hospital, December 2014

Bella after her most recent surgery, July 2020

Bella with her new INR kit, funded #BecauseofYou

The bloods needed the day before her last surgery were awful. Phlebotomy waited 20 minutes for her to calm down but she didn’t so they said they couldn’t do them right away. We then had to go back onto the ward for another go before going to theatre.

The first few weeks with Bella’s new INR machine were a little challenging, but me being able to do it for her was a massive help. Bella much prefers it that I can do this with her and we do not need to go to the doctors for a blood test.

When she first started taking Warfarin her INR numbers were, and still are, a little all over the place. If she’d needed to go to hospital each time we needed to test her INR level she’d be petrified of all doctors – and they’d be her least favourite people!

That’s the last thing we want. I can’t even begin to tell you how grateful I am that Bella and I are able to do her INR test together at home. And it’s nothing to her now. It doesn’t phase her. She’s proud of herself and how brave she is.

The machine makes a noise as it turns on and I’ve sat next to Bella while she’s playing/watching telly and it’s made the noise. She’s half rolled her eyes, looked at her hands to pick the finger I’m allowed to use and pointed at me with it. She picks out a LOL or My Little Pony plaster and then scrunches up her eyes so I can be a “vampire”!

We high five when the machine takes the blood sample straight away (because in the beginning when I was learning I didn’t always get it straight away!) and try to guess the number that will come up on the screen. We make it a fun experience because she needs to do it so regularly and it will be something she’ll need to do for the rest of her life.

She loves that she has some level of control of the machine, picking the finger we can use and the plaster. It’s so much better for her than the alternative.

If we didn’t have the INR home testing kit having to go into hospital all the time would be an absolute nightmare! It would be traumatic for Bella and it’s 25 minutes from our home. Also a hospital is one of the last places we want to be at the moment with the pandemic.

The convenience of this machine for so many reasons is a godsend and we are so grateful to Children’s Heart Surgery Fund for taking away the trauma of regular blood tests for Bella.

Bella started year one in September and on her first day of school we needed to do a blood test for a telephone appointment I had in the afternoon.

The INR machine meant that we were able to do the test and she could get on with the first day being back to school after six months off – due to the pandemic and her big heart surgery!

Because of you and your donations Bella can now regularly check her blood, with her mummy at home, without the the stress of going to hospital.

By making a donation to Children’s Heart Surgery Fund, you ensure we can keep being there for children like Bella and keep supporting hearts for life. Thank you.

Click here to make a donation to CHSF…

My name’s Tom. I had heart surgery at Leeds twice as a child, and on my 27th birthday I’ll be running a marathon to raise money for Children’s Heart Surgery Fund.

I’m looking to do it in a fast time and show the next generation of heart surgery children that the sky’s the limit for them!

I’m proud to say that I was born a ‘blue baby’. This means at the age of 6 weeks I developed a hole in my heart and was rushed into hospital, where I underwent open heart surgery.

Eleven years later I was back. I’d been treading water in a school competition, suddenly my legs stopped working and I sank to the bottom. Something wasn’t right.

Doctor’s found out that my aorta was slowly twisting and without intervention I’d be wheelchair bound by my twenties.

Again, an amazing medical team stepped in to perform surgery, saved my life and nurtured me back to full fitness.

It goes without saying that I’m eternally grateful for the skill, care and compassion of the Children’s Heart Surgery team, so I thought running a marathon to raise funds for CHSF might be a good way to say thank you.

“Instead of being in a wheelchair on my 27th birthday, I’m going to run the Manchester Marathon”

Instead of being in a wheelchair on my 27th birthday, I’m going to run the Manchester Marathon; I’m aiming to be pretty fast too! Hopefully this will send a strong message to youngsters who are approaching or have had heart surgery, as well as making a few of my old nurses and doctors smile. Rain, sleet or snow, I’ll do the training; it would be amazing if you could donate a few quid to support this truly exceptional charity. Thank you, Tom.

What an inspirational young man you are Tom. Thank you so much! #BecauseofYou

You can check out Tom’s JustGiving page here

Feeling inspired? If you would like to chat about ways you can get involved and help Children’s Heart Surgery Fund give us a call on 0113 8314810 or email info@chsf.org.uk – we’d love to chat to you about your ideas!

Are you a heart warrior? Want to tell you family’s story? We’d love to add your CHD journey to our blog and share your story with our families and followers. Drop olivia.lewis@chsf.org.uk an email.

‍♂️ Meet super heart dad LIAM whose daughter LACEY is due to have open heart surgery today.

Liam wanted to set himself the challenge of running 100 miles to raise funds for CHSF in the run up to his daughters operation and so far been blown away by the support from family and friends…

Lacey is going in for major heart operation today (with a bit of luck). A second heart operation to correct Tetralogy of Fallot, which is a serious heart defect, following the surgery she had as a baby.

To support the charity and give us focus throughout the lead up and initial recovery of the operation I decided to set a challenge to run 100 miles over a 6 week period. I started the challenge on 1st September and to date I have done 61 miles running – so I’m ahead of schedule for now!

I’ve been well supported with running partners helping out on a number of the runs. My initial target was to raise £250 but now we are just over £1300 which is amazing and any further donations to this great charity would be much appreciated.

We are supporting Children’s Heart Surgery Fund as it directly helps people like Lacey and their families through what is a very stressful and worrying time.

The fact CHSF directly supports people with heart conditions at Leeds Congenital Heart Unit really struck a cord with me, Lacey and our family and made us want to support CHSF as best as we can. The support we have received from CHSF is great, and also from family and friends has been outstanding!

Thank you so much Liam for your fab fundraising so far and good luck for the rest of your challenge – only 39 miles to go! To follow Liam’s progress, visit his JustGiving page.

And of course, all the best to awesome #heartwarrior Lacey for your upcoming surgery from all the CHSF Team

1 in 100 babies are born with a heart defect and we are challenging you to raise £100 before the year is out by taking part in our #1in100challenge!

Find out more

Heart warrior princess Sophia is nearly three months old but hasn’t yet left Leeds Children’s Hospital.

We spoke to Sophia’s mummy Charlotte about her little heart warrior’s journey so far…

Sophia was born in May 2020

Our journey started on 10th May 2020 – the day Sophia was born.

The amazing midwife suspected something wasn’t quite right when Sophia was born at Airedale Hospital and asked for a second opinion. Sophia ended up in the special care unit having a heart scan and before we knew it, she was being moved to LGI by Embrace.

It was identified straight away that she had a seriously complicated heart problem. We spent the first couple of days of her life thinking she wasn’t going to make it due to how complex her heart condition was.

Sophia was christened at two days old in the neonatal unit. Then we were given some hope.

The amazing Carin Van Doorn and team believed they would be able to do surgery but gave us 50/50 chance of survival due to the complexity of restructuring Sophia’s heart.

Her open heart surgery happened at four days old and was long and terrifying. But Sophia came out of the other side after a few turbulent moments on the way.

Ten days later, due to Sophia having so much fluid on board, she finally had her chest closed. A few days after Sophia had her ventilator and last chest drain removed.

But the following day the ventilator and chest drain went back in.

Sophia after her open heart surgery 

“Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart…”

Sophia now had chylothorax and her chest was full of fluid, making it really difficult for her to breathe. Around the same time, we found out Sophia had DiGeorge syndrome which they tested for after realising she didn’t have a thymus in surgery.

For a few days there was a lot of uncertainty as to whether Sophia was going to pull through.

Slowly and with lots of medication her chylothorax seemed to start clearing up and eventually her drain was removed again.

After seven weeks on a ventilator she came off it and finally started feeding again (at 1ml per hour to begin with).

At eight weeks old we finally left intensive care and moved to HDU on Ward L51. This is where Sophia received her lovely Katie Bear from Children’s Heart Surgery Fund.

Sophia is now 11 weeks old. We have moved out of HDU but are still on the ward now. The only thing keeping us here now is her feeding as her reflux is preventing us from being able to move on to bulk feeds.

I think we have learnt slow and steady is the way forward with Sophia. It really has been a rollercoaster of a ride.

Charlotte can’t wait for the whole family to be together

With every step forward it’s felt like we have taken a step backwards but hopefully we are getting there.

Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart but hopefully we will be home as a family soon.

Sophia is the strongest little warrior. All the staff at the LGI have been absolutely incredible. The room at Eckerlsey House has meant I can be near my princess all the time.

We are still going to have a huge journey with Sophia due to DiGeorge but we will deal with it as a family. She will need further heart surgery when she’s older. For now though we just want to make it home so that her big brother can finally give her a cuddle.

“We just want to make it home so that her big brother can finally give her a cuddle.”

I want to say thank you to the midwife and the special care unit at Airedale, the neonatal unit and PICU.

Ward L51 at the LGI – as well as all the surgical team and everyone that has been involved in Sophia’s care at the Leeds Congenital Heart Unit.

Eckersley House where we have been staying while Sophia is on the ward.

And finally Children’s Heart Surgery Fund. Without all of you we wouldn’t be where we are now. You really can work miracles.

Want to get involved but not sure where to start?

Check out our Fundraising at Home page for lots of ways to raise vital funds and awareness for CHSF

Would you like to tell your story? We are always looking for families to feature on our blog!
Get in touch with Digital Marketing Manager Olivia on olivia.lewis@chsf.org.uk

Once heart dad Rick’s son Mylo was safely at home after open heart surgery, he knew he wanted to do something big to say thank you to the people who saved his son’s life.

And when we say ‘big’, we actually mean a 50 mile ultramarathon for CHSF!

We asked Rick to tell us a little bit more about his fundraising and why he chose to take on his challenge for CHSF…

We were told before my son Mylo was born that he had Tetralogy of Fallot, along with only one kidney.

At the time we were completely devastated and scared at the thought that our child would need potentially lifesaving surgery.

We felt completely alone until we were given information about how many babies each year are born with congenital heart defects and felt reassured reading other people’s stories online.

Mylo is now doing extremely well after having his surgery in March of this year.

Rick holding Mylo after his surgery

“…the support provided by the charity is such a great help when dealing with the unimaginable worry and stress…”

Children’s Heart Surgery Fund initially helped us by providing information about what to expect for Mylo, and us as a family.

Then they helped us during our stay in hospital by providing accommodation for us to stay in, meaning we were never away from the hospital and Mylo. They also helped in countless other ways with all the things they provide to the hospital wards.

We decided to fundraise for Children’s Heart Surgery Fund as the support provided by the charity is such a great help when dealing with the unimaginable worry and stress of your child having this kind of operation.

Three close friends and I have recently completed the Calderdale Way Ultramarathon. 50 miles in total with as much elevation as going up Ben Nevis, twice!

My daughter and my friend’s children also joined us for the last half mile of our challenge which made it even more rewarding.

Rick’s daughter Rainey and friends on Wear Red Day

 My family has also been helping raise money too with my daughter Rainey and her classmate Billy approaching their headteacher to ask to have a fundraiser on Wear Red Day.

Mylo’s grandparents and our friends have also raised around £700 at their pub!

We asked Rick if he had any advice that he would give to anyone thinking of fundraising for CHSF…

Let people know your story. People are much more likely to support your cause if they know it has personally impacted you and your family.

We found a lot of donations came from people who didn’t know us but had read our story.

It was only during our stay at Leeds hospital that we realised how much Children’s Heart Surgery Fund did.

Accommodation, specialist medical equipment, toys, games and even a fish tank (which Mylo loved so much we had to buy him one!) supplied by the charity.

We cannot thank CHSF enough for everything they do.

And we can’t thank YOU enough Rick for taking on this incredible challenge for CHSF and of course all your generous friends and family!

An outstanding £2645.00 raised on your JustGiving page that will go straight to supporting heart warriors and their families, just like yours! #BecauseofYou 

Mylo loved watching the fishes on Ward L51

Take on a challenge of your own

Check out our virtual challenge ideas. Keep yourself healthy and active and support CHSF at the same time by getting your nearest and dearest to sponsor you online.

Got your own idea for fundraising or want to discuss how you can get involved in other ways?

Get in touch with Senior Community Fundraising Manager Lisa Williams on lisa.williams@chsf.org.uk | 0113 831 4810

Heart Mum Laura shares how her daughter’s diagnosis and treatment for CHD affected her mental heath.

Laura wants to start the  conversation around mental health for CHD parents and make it okay to say you’re not okay.

One whole year. It’s been one year since my daughter Elektra’s open heart surgery. My emotions are so mixed. Getting to wake up and see her so strong and fighting is the best thing ever. Seeing how far she’s come in this past year, every milestone will forever be held with my gratitude to the LGI, PICU and Ward L51.   You saved my daughter’s life and hopefully gave her more years before her next open heart surgery and, for the time you have given me with her, I will forever be grateful.

But on her heart anniversary I also have to remember the trauma this brought me. The massive impact on my mental health that was way beyond anything I expected. The decline, the endless hospital trips last year with my mental health needing support in A&E as I fell into a dark hole after Elektra’s surgery.   Forcing your baby against your chest and holding a mask with sleeping gas over their face while they go lifeless in your arms brings out a part of your brain you didn’t know existed. Elektra’s lifeless body lying in my arms, I placed her on the bed. I needed help from everyone around me as my legs went from underneath me.   I cried so hard and had to be pulled out of that room. I didn’t want to leave her, knowing the surgeons were about to stop my baby’s heart killed a part of me inside. What if that was the last time I would see her alive?

Eight hours passed from that moment. Eight long, tedious, and dark hours. She lost a lot of blood in that time. She had her first blood transfusion – they couldn’t stabilise her heart rate, but she was out of surgery. She made it! But we still couldn’t see her until PICU were able to stabilise her.   Finally, the call came that we could go and see Elektra. She was entwined with wires and tubes and beeps and buzzers. Endless medication surrounded her to keep her alive and as a mum it tore me apart that I couldn’t hold and kiss my baby. I could just stroke her tiny hand and hope and wait – and that was my only comfort.   In the days that followed her lungs collapsed, her wound got infected…but she fought. She fought hard. Ten days later we were home with a long journey ahead of us.

“Seeing your child go through something so serious really has a negative impact on your mind that not many speak about.”

Elektra was so strong and has fought so hard to be where she is today. But day by day I gave her my strength and I slowly crumbled.   2019 is luckily behind us. I’m stronger this year thanks to my family; my amazing friends – especially Linds, Lynds, Kerrie and Soph; a better support network and my amazing husband. Not to mention the beautiful smiles on my children’s faces. However, I’m now reliant on medication every day to keep my mental health stable. Some days are amazing, some days are okay… but luckily now, no days are the dark suicidal mess that I used to be in.   Seeing your child go through something so serious as open heart surgery (and a kidney removed the year before), it really has a negative impact on your mind that not many speak about.

Elektra with her big brothers Jett and Dallas

Yes, I’m forever grateful that my daughter is doing okay, but the journey to get here was traumatic. I’m proud of how far we’ve both come. Hopefully, maybe, her next heart anniversary, I might be medication free? That would be nice. Until then, here’s to ONE whole year of my baby’s zipper scar! She’s amazing and I’m so so proud of her.   I love you Elektra, I will forever go to the depths of hell and the heights of rainbows to give you the life you deserve.   If this can offer help to any other heart children and/or their parents, it would mean so much. I know that mental health isn’t spoken about often due to stigma and embarrassment, but I definitely believe it’s something we need to be more accepting and open about. After all, our children’s heart journeys are as impacting on us parents as it is on our children and it’s important that people realise that and recognise the impact of CHD as a whole.

Did you know? The Leeds Congenital Heart Unit has a dedicated

who are trained to support CHD patients and family members from pregnancy to adulthood. They offer a safe and confidential space in which difficult thoughts and feelings can be shared, processed and worked through.

The service can offer support to anyone who is currently under treatment of a Leeds Teaching Hospitals consultant and may benefit from input around their emotional wellbeing to support their cardiac health, regardless if they live in the Leeds area.

It’s been nearly a year since heart warrior Arthur underwent open heart surgery at Leeds. Today is his first birthday and his mummy and daddy look back at his journey so far…

We found out during Arthur’s routine 20-week scan at York Hospital that he had a heart condition and were referred to the Leeds Congenital Hearts team at Leeds General Infirmary. This is a situation that no expectant parent plans for and it is fair to say that our lives were turned upside down.

It was a blessing that we only needed to wait 2 days to be seen by Dr Brown and the team for a more detailed scan to understand exactly what was wrong with Arthur’s heart.

It was difficult for us to process what was happening but I remember this day vividly, not for the concern and worry but rather for the kindness and professionalism shown by the team – especially from Marie Wray who answered our many questions.

As mentioned, the 20-week scan had turned our lives upside down and we were left battling a range of emotions – sadness, despair, anger etc. but the wonderful team at Leeds Congenital Hearts had given us the confidence and faith that we would get through whatever came next.

By knowing that Arthur had an issue early in the pregnancy we clearly knew what the next steps would be and were then in regular contact with the team every step of the way until he was born.

Arthur was born at 8:56am on 22 June 2019 in Leeds General Infirmary and weighed 3.80kg. His conditions were Double Outlet Right Ventricle, Transposition of the Great Arteries, VSD and a Hypoplastic Aortic Arch. After being born he was able to spend a few minutes with his mum before being transferred to the Neonatal ICU to be assessed.

It soon became apparent that the Hypoplastic Aortic Arch was causing him the biggest challenge and he had a rough first night. He spent some time on a ventilator and had to battle through a couple of infections before he was able to go into surgery.

The day before his surgery his surgeon Miss Carin Van Doorn came to talk us through in detail what the surgery would entail. The conversation filled us with a renewed sense of confidence that Arthur would be fine and that he was definitely in the right pair of hands.

Arthur was fortunate that although his heart issues were numerous and complex, they were all fully repairable. The morning of his operation was a tense time, but we remembered back to the conversation with Miss Carin Van Doorn and the confidence this had brought us.

This was the longest day of our lives – 10 hours of surgery plus another 2 hours of emergency postoperative surgery in the PICU immediately after. By the end of the day Arthur was fully fixed.

After three and a half long weeks we were all finally back home in York, after temporarily relocating to Leeds General Infirmary. Arthur spent time in the Neonatal Unit, PICU and Ward 51 and finally a few days at York Hospital. All of the teams we dealt with were fantastic in the various locations where Arthur was treated.

This is something no parent ever wants to go through but it was made that much easier by the kindness and compassion we received along the way. Thank you all from the bottom of our hearts.

Since being at home Arthur has been doing great and we have just had the normal newborn baby challenges as first-time parents – it is like nothing had ever happened. He had his one year check up with the Leeds Congenital Hearts team at York Hospital a couple of weeks ago, which was managed very well given the COVID challenges, and we were pleased to hear his heart is doing great… In fact, it is doing so well that they do not need to see him again for another two years.

The work Leeds Congenital Hearts does on a daily basis changes lives for the better – both children and their parents. We cannot find the words to adequately express how they have changed all of our lives, so we will leave it as a thank you and ask that you keep doing what you do as it makes the world of difference. We also want to thank the support of Children’s Heart Surgery Fund who work tirelessly to support this life changing work.

The Yule family have opened a JustGiving page to celebrate Arthur’s first birthday
www.justgiving.com/fundraising/arthur-yule

After being born with a heart defect and battling paralysis, heart hero Leigh reflects on his journey with CHD so far as he looks forward into fatherhood…

 On the 6th September 1985 I was born in Harrogate with no concern. Me and my mum went back to the maternity unit and it was there that she realised there wasn’t something quite right – a maternal instinct, I guess. The midwife came to review my mums concerns and with a blink of an eye I was taken away. I was having difficulty feeding and my lips where a shade of midnight blue.

In that five minutes my parent’s world was turned upside down.

The doctors and midwives told my parents that I needed to go to Leeds for further investigation. “Your son may have a heart problem”. The main cardiac unit back then was at Killingbeck Hospital.

My dad accompanied me to Killingbeck for further investigations. There must have been something going on because the lady in the picture was of the late Baroness Trumpington, which also got published in the Yorkshire post. My mum was still in a daze and patiently waited for any news in Harrogate hospital.

Just remember, there were no mobile phones or internet back then – it was a pay box phone to keep in touch with one another.

Leigh as a baby at Killingbeck hospital, being visited by Baroness Trumpington. Photo credit: Yorkshire Post

“My parents were given a run down that without an operation I wouldn’t survive past two.”

One Investigation after another, doctors and nurses introducing themselves to my dad, and finally they came up with a diagnosis. I had a TGA (transposition of the great arteries).

My parents were given detailed explanations, both separately and together as my mum was still recovering from giving birth to me. I can’t put words in their mouths, but I think a brick wall had just slammed into their faces.

The shock of having had what they thought was a healthy baby, now faces a fight for survival. My parents were given a run down that without an operation I wouldn’t survive past two. It goes without saying that my parents wanted to do everything that the hospital could do.

Leigh graduating from universiy with a degree in Children’s Nursing (2010)

Fast forward to when I was 18 months old, I’d have minor surgery and medication to get me to the right weight for the surgeons to carry out my major surgery. I was just starting to crawl and stand – I mention this because I was about to start that learning journey all over again. Whilst having my major operation I had a blood clot that burst and paralysed my left side – the medical term is ‘left hemi paralysis’.

An interesting fact is that I am only maybe a handful of patients that have a Sennings Procedure (basically my plumbing has been adapted). These days it is the arterial switch.

Anyhow, with minor hiccup the surgery was a success and I was soon reunited with my parents and they took me home. I was to have regular check-ups (annually) and liaise with physiotherapy to try and get me walking, and crawling.

Throughout my school days I had speech and language support, physio support, I was regularly put into casts to try and get my foot a 90 degrees and help stretch the tendons.  High school had its highs and lows, and that is all I will say. My health was good, I just had other issues going on.

Skip to the present day and I look back at what I have achieved. This is no way of gloating but it’s a good reminder that anything is possible. With the right motivation and positivity from family and friends you can achieve anything. I have my parents to thank for that.

“Just because I have a heart condition and a left hemi shouldn’t stop me from reaching my goals in life, in fact it aided me to do more things.”

1. I live my life to the fullest
2. I love my family and friends
3. I’ve been with my partner for 14 years
4. I am becoming a dad in July 2020.
5. I went to high school
6. I went to university
7. I got a degree in children’s nursing (2010)
8. My first proper job at RDH on NICU unit
9. Became a mentor and qualified in speciality (neonatal nurse).
9. Worked at Pinderfields NICU
10. Now work in an amazing place called Martin House
11. I learnt to drive a manual car (even with a dodgy leg!)

Leigh now, looking forward to becoming a daddy in July 2020!

My next project is to start my own business in photography. I like the idea of people appreciating and buying my artwork to hang in their house. That fills me with pride.

The list can go on and on but that’s not the point. Just because I have a heart condition and a left hemi shouldn’t stop me from reaching my goals in life, in fact it aided me to do more things. It added fuel to the fire. The ambition, the motivation, that this lad with a heart condition and mild CP can do it better than you, or at least give it a go!

My life so far has been an interesting one and I am sure I am not done with it yet! If you asked me what my best feature is, I would tell you it’s my scars. My scars have been with me since I was 18 months old. I’ve grown up with them and they’ve grown up with me.

They tell my story, a piece of history, a tattoo that will forever be with me. They do not define me, but I define them. They are a piece of me, and I would be lost without them.

It’s International Selfie Day on the 21st June and to celebrate we’re inviting you to share your #ScarSelfie on social media!

Snap a #ScarSelfie
Open a fundraiser at facebook.com/fund/childrensheartsurgeryfund
Tell your #ScarStory to family and friends

Share your scar selfie with pride in a social media post on 21 June – don’t forget to use the hashtag #ScarSelfie and tag Children’s Heart Surgery Fund in your post!

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Heart Hero George has just undergone his third open heart surgery at the Leeds Congenital Heart Unit and his whole family can’t wait for him to be home.

We spoke to George’s mum Jane about George’s treatment, his CHD journey so far and how the family have been supported by Children’s Heart Surgery Fund…

George ready for his third open heart surgery

We are sat in Room 14 at the moment whilst George is in surgery and it is lovely. Thank you so much for the room and space for us to be together as a family, it makes such a difference and Poppy is enjoying being nearby for George as well.

He went in fine this morning chatting away to everyone. He is an old pro with it being his third open heart surgery and three stays on the ward last year for cath lab surgery. We are all so proud of him.

George’s sister Poppy has been making ‘Happy Beads’ and bags of sweets at home this week as thank you gifts for the brilliant team at Children’s Heart Surgery Fund and also for the wonderful nurses in PICU and especially on Ward L51.

We have also made ones for Mr Jaber who did such an amazing job with George’s complicated eight hour surgery on Monday, Dr Michael who has been George’s lovely and brilliant consultant since he was born and Mike Fresson (Congenital Cardiac Liaison Nurse) who has also been really helpful in the past few weeks with George’s surgery when we needed some advice and support. We have them all ready to hand over when George hopefully leaves the ward in the next few days!

They are our little way of being able to say a huge thank you again to everyone who has helped us as a family and especially George, who at age six, had his third open heart surgery on Monday 8th June for his congenital heart condition which is Ebstein’s Anomaly.

The amazing care and support we have had as a family since finding out during our 20 week pregnancy scan in 2013 that our baby had a very complex heart condition has been so important.

The condition would require a number of major open heart surgeries in the future and George living life with only half a working heart.

“It has been especially difficult for this surgery with only one parent being allowed on the ward, unlike all of our previous stays.”

It was very worrying and unexpected news to receive, however we have had absolute faith and confidence in the expertise and dedication of the team at the LGI throughout our entire journey with George.

Thanks to them George had his first open heart surgery (a Blalock-Taussig shunt at 36 hours old). He then had his Glenn surgery at 10 months old and now has just had his tricuspid valve cone repair a few days ago. He is recovering very well on Ward 51 at the moment and we cannot wait for him to come home!

It has been especially difficult for this surgery with only one parent being allowed on the ward, unlike all of our previous stays.

“Thank you so much for the room and space for us to be together as a family, it makes such a difference.”

George saying hello to Poppy at the door of Ward L51

But we have been so grateful to Children’s Heart Surgery Fund for providing us again with a family room in the Brotherton Wing. This has allowed us to wait whilst George was in surgery and for my husband to stay in overnight whilst George was in PICU and HDU this week.

We having been visiting each day to say a quick hello and to wave through the door which is especially important now that George is up and walking as his big sister Poppy was so pleased to have been able to see him just for a few seconds today!

A huge thank you again to everyone for everything you have done for George, and us as a family. We will be forever grateful, and we are just about to sign up for the Virtual 10K on Sunday 5th July to continue fundraising for CHSF as we know how much it means to families like us!

Thank you again from the Hinkins family ❤️

Since this post was written, George is now home with his family and recovering well with his new Katie Bear!

Want to get involved but not sure where to start?

Check out our Fundraising at Home page for lots of ways to raise vital funds and awareness for CHSF

The CHSF Team are on hand to help with anything you need for your fundraising!
You can get in touch with us at info@chsf.org.uk or call 0113 831 4810