Heart Warrior Aoife and her sister Ellie set themselves a very big challenge last month when they chose to walk or run the length of a marathon over the month of May!

We spoke to Ellie and Aoife’s mum Jess about what inspired the girls to take on this challenge for Children’s Heart Surgery Fund and of course we wanted to see how they got on…

Ellie and Aoife with their mummy Jess

My youngest daughter was diagnosed with an atrial septal defect about 18 months ago. Although she is currently very well, it may cause her problems later in life and so she will need to have it closed in the next year or so.

When coronavirus hit, we decided to raise money during lockdown to help Children’s Heart Surgery Fund when it really needed it. We know how much families benefit from the support offered by the charity.

My two daughters Ellie and Aoife (6 and 4) decided that by stretching out their daily walks and runs they would attempt to each complete a marathon during the month of May. They were so keen to get going that we ended up starting a couple of weeks early!

By the end of May they had far exceeded the distance we expected – reaching 99km and 92km respectively. That’s more than 2 marathons each!

We are very grateful to our friends and families for their support and encouragement and feel glad to have contributed to such a worthwhile cause.

The whole CHSF team are so proud of heart warrior Aoife and her sister Ellie. They set themselves a target of 26.2 miles each and £800 to raise and they not only more than doubled their distance covered, but smashed their fundraising target too.

Thanks to Ellie and Aoife’s awesome friends and family, they have raised a phenomenal £1400 for Children’s Heart Surgery Fund!

Due to the Coronavirus outbreak, our charity is seeing a massive gap in funding. Ellie and Aoife were keen to do their bit to contribute and we are so incredibly grateful.

To Aoife and Ellie…

Everything we do for our heart warriors and their families is because of amazing people just like you two. You should be so very proud of yourselves. From the bottom of our hearts, thank you. #BecauseofYou

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

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.

Leigh is walking 50 miles in the month of May for Children’s Heart Surgery Fund

“I decided if I can help one charity out during lockdown then that would be a great achievement and knowing that I would be playing my part in helping patients and their families get the support they need, especially in these times.”

“I also chose CHSF because 34 years ago I was born with a congenital heart defect and needed life-saving equipment and the knowledge of professionals to keep me alive. Without the support from CHSF this wouldn’t be possible – my parents are truly grateful and appreciative to all that where involved!”

Feeling inspired to take on a challenge of your own?

Check out our virtual challenges page for ideas or register your own!

After having open heart surgery at just 18 days old, heart hero Sally turns 18 today! She wanted to tell you about her heart journey so far to give hope and inspire younger heart warriors.

Hi I’m Sally and today I turned 18!! I was born with a large VSD and Transposition of the Great Arteries.

At 18 days old I had open heart surgery and had a VSD repair and arterial switch. I still have a slight mitral valve regurgitation and mild dilation of the aorta.

I have annual checkups but at the moment no further surgery is needed.

One of my favourite hobbies is photography. I’ve just finished my college course and I’m aiming to go to university to study it even more in September.

I’m also a active member of the LCH youth forum.

I’m very thankful to be still here after my hard start to life but that’s all down to the amazing staff of the #NHS. And for that I would like to say thank you!!

Keep up the amazing work you are doing for our country at this incredibly difficult time.

I will keep clapping on Thursday evenings until all of this is over…thank you

HAPPY 18TH BIRTHDAY SALLY from all of us at CHSF and the Leeds Congenital Heart Unit

Help CHSF to keep supporting heart warriors like Sally, for life.
Every donation makes a huge difference.

Visit chsf.org.uk/donate

Heart mum, Jade, never thought she’d be the one up dancing but the Over The Wall family camp soon helped her leave all her worries behind!

Last September, Jade and her family attended our two night residential activity camp specifically designed with heart families in mind. We asked her to tell us a little bit about their experience…

When we go on a holiday and they ask for parents to come up to the front to volunteer, I am the mum that quickly hides away!

Going to the Over the Wall Family Camp, I soon realised that this camp was going to be my idea of a worst nightmare. Singing, dancing, abseiling…!

Inside I was dreading it but my partner and the kids were so looking forward to it. So, I put on a brave face and tried to show that I was excited!

When we arrived, we were greeted by such lovely volunteers and staff. They gave us t-shirts to wear and free water bottles and that’s when we met our volunteers for the weekend…

Each family is assigned either one or two volunteers to help your family in any way possible over the weekend.

From carrying your water bottles, to playing games with the kids or even making you a cup of tea… I was beginning to come around to this camp!

I realised how important these ladies were to our family. When it’s lunch time and you’ve got three kids to sort out and suddenly, you’ve got someone helping you – it’s unreal!

On the first night of the camp the children were allowed to dress the parents up and paint our faces – no rules! Our kids were in their element! I was cringing on the inside, but the laughter and smiles were worth it!

“Sometimes we get so wrapped up in the taking care and organising that we forget about the joining in and letting our hair down.”

One of my children is extremely quiet and he doesn’t like social situations. Yet, he became very close to some girls who were staying at the camp with us.

He was doing things out of his comfort zone and not wanting mum or dad there!

Our son Bobby has just turned four and has hypoplastic right heart syndrome.

Before we went on the camp we were worried he wouldn’t be able to do all of the activities that his brothers could. But he did it all, apart from the abseiling!

If it was too cold outside there was a room full of games we could take him to but this wasn’t often as he wanted to join in.

Each mealtime or group meeting means dancing! The mum who normally hides away was joining in! Sometimes we get so wrapped up in the taking care and organising that we forget about the joining in and letting our hair down.

The Over the Wall family camp makes sure you do just that. No one is left holding the bags or waiting with one of the children. You have volunteers by your side making sure you enjoy your family.

We go on plenty of holidays but the Over the Wall camp was the first time we actually felt like a family with nothing holding us back.

You really don’t need to worry about anything – apart from brushing up on your dancing skills!

18 – 20 September     FREE
Two night residential family activity camp

To qualify for a place at camp, one child must be between 0-17 and have been treated at the Leeds Congenital Heart Unit. If the heart child is under 8 years old, then at least one sibling must be aged 8-17 in order to take part in the designated activities and enable the family to apply for a camp place.

Apply for camp now…

CHSF family camps are run in partnership with Over The Wall. If you have any queries about camp including camp activities, suitability and eligibility please email campers@otw.org.uk or call 02392 477 110

Lily’s story, told by dad, Richard

“On the 10th May 1990 our second child, Lily Doyle, was born. She was quite frail and was sick after most feeds, but in our limited experience as parents (one other child at 18 months old) this was quite normal.”

This continued for the first month of Lily’s life and she did not appear to be gaining weight. Our GP was unconcerned but my wife (Sarah) became so concerned towards the end of Lily’s first month of life that she called a GP out to the house.

Fortunately, he saw something was wrong and whisked Lily straight into Harrogate Hospital where she was diagnosed with a hole in her heart. Lily was immediately transferred to the Congenital Heart Unit at Killingbeck Hospital in Leeds.

Our lives fell apart at this point as Lily was kept in hospital whilst they tried to build her up to be strong enough to have open heart surgery. This also had an impact on our care for our 18 month old son as Sarah and I spent every day at the unit – and saw what a fantastic job they did.

After two months in the hospital, Lily had gained sufficient weight to risk the operation to close the hole (with pigskin!) but there was no guarantee it would be a success. Lily was taken to theatre in the arms of a porter who insisted we said goodbye to her – not easy.

The good news is that the operation was a great success and we brought Lily home within a week of the operation. We were apprehensive about the outcome of the operation but it was as if someone had flicked a switch. The pale, frail baby that went into the operation exited intensive care with colour in her cheeks and thereafter was a normal baby.

Check ups were initially every month, then three months, then six months, then annually, then every three years until she was a teenager when she was discharged – and fortunately she has been perfectly normal since.

The even better news is that she is now a bright, bubbly and beautiful 29 year old fitness fanatic whose only legacy of her time at the Heart Unit is a couple of scars and the only restriction being that she cannot have her ears pierced as this could cause an infection which might migrate to the heart.

The help and support we received as young, inexperienced parents from the team at the Heart Unit was unbelievable.

Shortly after Lily’s operation a fundraising ball was planned and my wife Sarah joined the committee. A great ball was organised at Harewood House with the ‘fake’ Rolling Stones as the turn. I was asked to tell Lily’s story to the assembled party goers and many a tear was shed.

Sadly I can’t remember how much money was raised but it was a healthy sum which went towards the great work that CHSF do in supporting the Leeds Congenital Heart Unit.

Inspired by Lily’s story? Want to get involved and start raising vital funds to support Yorkshire’s heart patients? Click here to get started on your fundraising journey!

• From: Leeds
• Mum: Claire
• CHD: Tetralogy of Fallot

James was diagnosed with Tetralogy of Fallot at our 20 week scan.

At 4 days old James was ready to have his tiny heart stented and he did not have a name. So before he went for his procedure we named him James. Dr Jamie Bentham did his procedure and said we couldn’t have chosen a better name.

James grew well and outgrew his stent so we were scheduled in to replace it for a bigger one. I kissed James goodbye as he went off to sleep.

Two hours later and James had still not come out of the lab so I started to ask if there was anything wrong. Mothers instinct, it was!

Whilst in recovery James started to de-sat very quickly and quick ultrasound showed that the stent was no longer in his PDA meaning no longer any open valve to allow blood to flow.

He was rushed into emergency theatre to repair his heart to keep him alive.

Many hours later we were told James was out of surgery and the amazing Stefano Congui had not only managed to repair James’ heart but had not had to use a conduit to do so.

This was the best possible outcome from one of the worse possible situations. Mr Congui is still considered a god to this day by all our family.

James is now 6 years old and will continue to have MRI’s to monitor his condition. When we were offered the chance for James to trial an MRI while awake, we were more than happy to take part.

Anything that reduces the number of times James has to be put to sleep for procedures and surgery means the world to us, as we all know it doesn’t get any easier when we see them go off to sleep and kiss them goodbye.

James loved the whole

experience. The playing before hand, watching the movie, me getting to be with him throughout…

Everyone at the LGI has been amazing where James’ care is concerned we cannot thank you all enough!

Meet James! James is 6 years old and has Tetralogy of Fallot.

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James came to visit the Advanced Imaging Centre for a research MRI scan and is the youngest participant we have had take part in our study so far.

James and his mum Claire hoped that taking part in our study might mean his next clinical MRI scan could be done awake and prevent James needing a general anaesthetic.

we received enough funding to buy a toy MRI scanner which looks just like the real thing in miniature.

We were also able to buy figures to put on the MRI scanner and a toy hospital and ambulance.

These toys are used to help explain to participants like James what will happen during an MRI scan. The toy MRI makes realistic noises to show just how loud the scanner is.

We want to make sure that our participants are fully aware of how the MRI looks and sounds before they are scanned for real.

Play therapy is particularly important for our child participants because we know that children learn through play. It gives them time to explore and ask questions about what is going to happen to them during their visit.

James had brought his favourite teddies with him to accompany him onto the scanner so our first job was to scan them first to make sure they didn’t have any metal in them… we think they enjoyed their scan too!

James was so prepared after spending time playing that when he saw the real MRI scanner his shouts of “WOW! That’s so cool” made everyone smile!

Dr Malenka got James all ready to be scanned and James said he felt like a space man going into space. Our participants are able to watch a film or series whilst on the scanner.

James had already decided he was watching

and loved that only he could hear it with his special ear phones. James’s Mum was able to sit with him during the scan.

James could see her through the mirror we use so participants can see the film they are watching.

Once James and his teddies were ready we started the scan and what a superstar James was! We were all very proud of James and when his MRI scan was finished his first question was “can I go play with the toys again?”

The toy MRI scanner and figures were obviously a very important part of his experience with us. Being able to offer this play therapy is all

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James and his Mum left our department with big smiles on their faces, feeling more confident that when James has to have a clinical MRI scan that he will be able to tolerate it being awake.

Mum Dee shared Robynn’s story:

Robynn was born prematurely on November 8, 2018 at 33 weeks – 6 weeks before schedule and was rushed to ICU (Intensive Care Unit) at Jessops Hospital in Sheffield. She was put on breathing monitors and antibiotics as mum Dee had contracted sepsis.

 

Robyn was a good weight at 5lbs and 5ounces and was doing really well. A few days in, she had a heart scan that confirmed she had two holes in her heart and one of her tubes was tightening so would need open heart surgery before reaching 6 months old.

 

Robynn had a few issues with feeding due to her heart condition. Mummy and daddy agreed she would be tube fed at home and had all the training so she could be home for Christmas.

 

But the morning she was due to come home, she became really unwell and was rushed back into intensive care. She deteriorated – not keeping any milk down and not gaining weight. The doctors decided to change her milk to dairy free which helped the situation a little, but Robynn was still very unwell.

 

The tests came back and she was diagnosed with neophobia and bronchiolitis. She spent 19 days in the intensive care unit in an incubator not able to have cuddles with her family.

 

She finally come through the worst, returned to the high dependency unit and could come back out for cuddles. But Robynn’s breathing never recovered from this and her heart seemed to be getting worse.

 

The doctors told her mummy and daddy that her heart was failing and that she would need open heart surgery right away.  This was devastating news as they wanted her bigger and stronger first – but it had to be done.

 

Robynn was transferred to Leeds immediately and went for open heart surgery on February 11 2019. The operation lasted 5 hours where they repaired the two holes and opened her vessel wider.

 

It was successful and she was back in the intensive care unit, where she recovered extremely quickly. She was back on a ward in 24 hours smiling away at everyone!

 

In the midst of all this, Robynn’s parents were told that they she was being tested for a rare condition called DiGeorge Syndrome (22q11  deletion). And it came back positive.

 

This is a rare condition that can affect children in lots of different ways – no child is the same with 22q syndrome – but often includes congenital heart disease. More information at www.nhs.uk/conditions/digeorge-syndrome/.

 

Robynn spent 4 more days after in hospital after her operation, and then got to go home on February 16, 2019 with her 2 sisters and mummy and daddy after 4 long months!

 

We have been home for 3 months at the time of writing and Robynn is thriving. She is still tube-feeding, but keeping her milk down now and gaining weight lovely!

From: Selby
Mum: Sara Worker
CHD: Truncus Arteriosus, Ventricular Septal Defect

At our 20 week scan in Selby, we heard those words that no parent wants to hear… “there’s something wrong with the baby’s heart”.

We were taken straight to see the consultant and we were referred to Dr Barwick at Leeds General Infirmary. We were told not to Google anything and to patiently wait for the appointment in Leeds. At the scan we were told our baby had a very rare heart condition called Truncus Arteriosus and Ventricular Septal Defect.

This condition affects less than 5 in every 100,000 babies and, as he was likely to be born in heart failure, our baby’s surgery would be within the first six weeks of his life.

On July 28th 2014 Adam Dennis Worker came into the world and was a good healthy 9lb 2oz. All the doctors were very impressed at his size!

After a short stay in hospital we got to go home for ten days but by August 12th he really couldn’t manage anymore. We had already had an appointment at the LGI, so whilst there, we rang the cardiac liaison nurse and she asked us to go up to the heart ward for assessment. Adam tried so hard to feed but he was exhausted. His weight had dropped to 7lb 12oz and he slept about 20hrs a day. There and then we went onto the amazing Ward L51 at LGI for them to take care of us. We met so many wonderful people including the incredible Mr Jaber who was to save Adam’s life.

Adam went to sleep in Daddy’s arms and Mr Jaber spent
7 1/2 hours repairing his broken heart! Afterwards he spent time in PICU, a few issues with his heart rhythm and rate, but once under control we were then straight onto the ward as he was doing so well. We were due to go home but Adam’s wound was open a little so Mr Jaber wanted us to stay over the weekend.

The next day Adam became very poorly, very quickly, and was rushed back to HDU in the middle of the night. Doctors told us that he had developed a dangerous tachycardia and an Atrial Flutter. They took him back to PICU to try cardioversions, where they stop the heart and restart it. This didn’t work first time and he ended up having four of these. This was one of the most terrifying times. After 32 days we finally made it home!!

Having been home only 36 hours, Adam’s colour didn’t look right, he was quite sleepy and was finding breathing a little hard. We took his sister Aimee to school. She was so excited for everyone to meet Adam – he was like a celebrity!

After speaking to cardiac liaison we went straight to A&E and within two hours Adam’s body shut down – he had a full respiratory collapse and was rushed back to PICU on a ventilator. Finally, towards the end of September, we made it home. Many blips along the way, several very fast rides by ambulance with bronchiolitis, croup and respiratory issues.

Adam is now five and had his second open heart surgery with Mr Jaber in March 2019. This surgery went very well, no arrhythmias or complications and five days after surgery we were heading home. We will be forever indebted to Mr Jaber, Dr Wilcoxson, Dr Barwick and all the staff on Ward L51, PICU and of course Children’s Heart Surgery Fund.

There has been a lot of media coverage in recent years about heart units in the UK. A set of 200 standards have been drawn up that every unit needs to reach. One of the largest, most expensive of these standards is to build a ‘hybrid theatre. CHSF’s “Keeping the Beat” campaign launched in May 2016. CHSF provided a large sum of money to make this theatre a reality and it opened in Spring 2019. There are many things that the hospital want and need that just would not be available without the funds so generously raised by CHSF’s supporters.

Whilst Adam was in hospital, we noticed just how much was provided by CHSF. We wanted something to focus on and the chance to give something back, so calling on our friends and family, the first fundraising event we participated in was the Firewalk at Stockeld Park in November 2014. Several of us joined in and raised over £2000 – and there began our fundraising plans!

Around Adam’s first birthday, we came up with the idea of holding a huge party and the ‘Beach Party’ was born. A massive community event – so many people offering support.

We’ve done stalls, bucket collections and a weekend at the Yorkshire Game Fair. When she was at primary school Aimee organised Wear Red Day every year to raise her own money for CHSF. For Lent one year Aimee gave up sugar. She did it! She also learnt a lot about how much sugar is in food! She wanted to raise £50 but ended up about £200 over her target!

We stayed in the parent accommodation at the Brotherton Wing for the whole time Adam was in hospital. We were so grateful to have somewhere that we could all stay and be close to Adam.

Whilst there, Adam’s Dad, Mark, was working for Howdens Kitchens and they offered to provide and fit a brand-new kitchen for the parent accommodation. We could not have been more delighted at their generosity. It is lovely to see how good it looks and how functional it is. There is even a lovely plaque on the wall as well…

CHSF provide help in many ways. They fund vital equipment, provide staff, play equipment and furnishings. They have accommodation for parents, so you are always close to your child, give financial support for families who are long term stay and generally support the staff and families in caring for critically ill children.

If you would like more information about congenital heart defects in babies, children and adults you can visit leedscongenitalhearts.com, funded by CHSF!

Oliver was born on 18 October 2009 at 8.11pm as Cheryl Cole was singing ‘Fight for this Love’ on The X Factor – that is my ringtone to this day!

I would like to say I have some psychic powers. I don’t, but from the moment he was born I was so pleased to have a little boy, having already had my beautiful little girl, Grace in 2008.

Immediately I became paranoid that there was something wrong. I asked and asked if he was alright, to the extent that they got a doctor in to check him over, and told us he was fine.

When Oliver was born he was purple (cyanosed) and at the time we were told that this was because the pushing stage of labour had been very quick.

I stayed overnight in hospital with Oliver and noticed that his colour didn’t improve. He felt cold and would not settle. He didn’t want to feed, just suckle and be held. I held him all night until Keith and Grace came to collect us and take us home the next morning.

As the paediatricians were doing final checks before discharge, they noticed there was no oxygen circulating around Oliver’s body.

They called a specialist from another hospital to scan his heart. I was taken into a medicine cupboard and a rubber glove was tied around my arm so that they could take my blood to test for antibodies. Strangely, it was in that moment I realised it was serious – they didn’t have time for the proper equipment.

I was taken into a room with a covered cot and I was told that Oliver had Transposition of the Great Arteries and his pulmonary arteries, aorta and two smaller coronary arteries were all in the wrong place. No oxygen was circulating around his body. They managed to find a place for him at Leeds Children’s Hospital and he was

‘blue-lighted’ to Leeds. We weren’t allowed to travel in the ambulance with him. He was too ill.

By the time we arrived in Leeds they had performed an emergency balloon septostomy. He had been too ill on arrival for them to waste time contacting us for consent. But he was alive.

Oliver remained in hospital until he was 11 days old, and then underwent a 10 hour open heart surgery. He went on and off heart bypass and we were warned if he survived there was a risk he could be brain damaged as a result. He made it through surgery and after a week in hospital was discharged.

He has been reviewed ever since. They think he may need further surgery. The arterial switch was only 25 years old when he had it, so effectively, they have no idea how he will be once he reaches 26.

Despite being told the risks, Oliver does really well at school, loves sport and is a goalkeeper for his football team. He loves playing on his Xbox, is popular with his friends and is a bright, intelligent, funny and loving boy.

If there hadn’t been a place for Oliver in Leeds, it is unlikely that he would have survived, even if taken by helicopter. Apart from that, any further from home would mean I wouldn’t have seen Grace most days, and before the day that Oliver was born I had never spent a night away from her.

We are honestly forever indebted to the Leeds Congenital Heart Unit and more importantly to Oliver’s surgeon Mr Watterson, his consultant Dr Blackburn and the entire team.

For more information about congenital heart defects in babies, children and adults visit

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