James was diagnosed with Truncus Arteriosus after a referral was made during his 20-week scan.

James made a surprise appearance 6 weeks early and he was rushed into Leeds General Infirmary.

He was taken straight to the Neonatal Unit and was put on a ventilator.

During the first 10 days of his life, he was very unstable.

His mum Laura says:

James was extremely poorly and we thought he wouldn’t make it through the night. He did, and he had emergency surgery the next day to buy him more time to grow, as he was too small for this full repair.

The first surgery was a success and James underwent a further open heart procedure, once he was big enough a few months later.

The 10 1/2 hour surgery was successful and James went from strength and strength.

Laura describes their time in hospital:

Everyone has shed a lot of tears and have been very scared at times, but as a whole family we have managed to get through the toughest 4 months of our lives. This has just made us stronger.

James will continue to be monitored and will need further open heart surgery throughout childhood.

James is a superstar in our eyes. We are just enjoying our time with him at home and trying to be a normal family.

James’ family are planning a big fundraising event for his first birthday!

Hugo was diagnosed with transposition of the great arteries and ventricle septal defect while his mum, Toni, was pregnant.

When Hugo was born, surgery was scheduled for when he was 8 days old. Toni says:

The day of surgery was the longest day of our lives.  Even though the surgery itself was a success, later that night the surgeon had to come back and open up Hugo’s chest as his heart was beating too fast. Hugo remained on intensive care during that time for a week.

Hugo was able to go home for the first time a few weeks later. Toni describes the journey they have taken as a family:

Finding out that Hugo had congenital heart disease (CHD) was heartbreaking. He is our first child and instead of being able to enjoy my pregnancy I spent the second half of it worrying about his surgery and his prognosis thereafter! But the staff at Leeds were amazing and they really tried to put our minds at rest throughout the pregnancy. I did not know anything about CHD before this and have now learnt so much and I am in awe of all the parents and children that go through this journey.

During their time at LGI, Children’s Heart Surgery Fund provided accommodation for the family so they could be near Hugo. Toni adds:

Me and my husband were given accommodation for the whole 3 weeks that we were in Leeds following Hugo’s birth and I will be forever grateful for that. We do not live near Leeds and to have had to leave Hugo in the hospital and return home would have broken my heart.

We took a lot of photos of Hugo during that time in hospital so that we can tell him all about it when he is older.

Hugo continues to do well at home and the family are hopeful he will not require further surgery.

Jessica was diagnosed with Ventricular Septal Defect (VSD) at 7 months old after her GP detected a heart murmur.

After numerous appointments and discussions with specialists, the decision was made that Jessica would need open heart surgery to correct the hole in her heart.  Her surgery was done when Jessica was 2.

The team were happy with the closure and, although there was some fluid accumulation, this was dealt with quickly and Jess was discharged after 6 nights in hospital.

Jessica’s mum Jo describes the process from diagnosis to intervention and the impact it has had on the family as a whole:

Although Jessica’s heart condition is fairly simple compared to others, this has still had a massive impact on the whole family. The shock and concern at diagnosis, the never ending worries and questions and the decision making process have been incredibly challenging. Doing this and continuing daily life as a family, has been a constant challenge. We have felt like we are living our lives waiting, from one appointment to the next, from one decision to the next, from one phone call or letter to the next. Waiting for the letter or call to give us a date was one of the hardest things, knowing we were on the cancellation list so everything could suddenly change if we got a call, putting everyone and everything else on hold because we just didn’t know what was happening.

Jo explains how she hospital staff made sure everyone in the family were looked after during Jessica’s time in hospital, particularly her son Harry, who found it difficult to understand what was happening to Jess and was understandably worried about her.

Harry has had support from the play specialists to understand this better and Charlotte (one of the nurses on ward 51) made him feel much more comfortable simply by explaining what she was doing when she did Jess’s observations, and by involving him in this.

In addition, Jo describes the care she received from one of the clinical physiologists funded by Children’s Heart Surgery Fund:

We couldn’t have got through this without her. Thank you so much if the CHSF provide funding to her role. She rang every few weeks while we were on the waiting list for surgery. We had a face to face session with her to talk things through. We chatted to her once we had taken Jess to anaesthetic, she came to see us on ward and in PICU. Her friendly, likeable manner has given myself and my husband the support we so desperately needed. She appeared when we needed her, as if she knew we did!

The family have organised and taken part in lots of different events to raise money for Children’s Heart Surgery Fund. These have included; the Superhero Walk, Wear Red Day and fundraising parties to name a few.

Jo says:

Before surgery I thought CHSF funded a lot of the things that the NHS couldn’t afford but that some may see as non-essential. I have changed that view following Jessica’s surgery. The CHSF fund essential services and equipment without which the patient experience would be much less positive. We are trying to think of fundraising to do in the future as we are so grateful and want to support the charity. You will be our charity for life. We will raise as much for you as we can.

Albie Carroll, one, from Bingley, West Yorkshire was born with four holes in the heart, coarctation of the aorta and slight hypoplastic left heart. He was diagnosed with congenital heart disease when he was eight weeks old.

At eight weeks old, Albie was rushed to the Leeds General Infirmary and underwent 12 hours of major surgery.

During recovery, the Children’s Heart Surgery Fund organised for the family to speak to a psychologist who specialised in helping parents going through difficult times, which they cite as a huge help to them during the experience. Christian Carroll, Albie’s Dad says:

Albie is a miracle. We owe so much to the team at the LGI, they have given us the chance to watch our son grow up. Words cannot describe what we have been through and how much the support the Children’s Heart Surgery Fund has given us.

During their time in hospital, the Carroll family decided they wanted to give something back and vowed to raise as much money as possible for the Children’s Heart Surgery Fund.

They’ve organised numerous fund raisers, taking part in physical challenges, such as the Leeds 10K and the London Triathlon and hosting the ‘The Love Heart’ charity ball in February 2016. Christian continues:

We received some incredible donations for the charity ball auction prizes and were thrilled to raise over £31,000 from the evening!

The wider Carroll family have also helped to raise funds; when Albie and his brother Kody were christened, instead of gifts the wider family gave donations to the Children’s Heart Surgery Fund and together raised a further £600. Christian concludes:

There are lots of different activities families can do to raise money and for us, it really helped us come to terms with what we have been through and adopt a positive attitude driving such a difficult time. We want the charity to continue to help families like us and are thrilled that the money raised is going towards a new state of the art theatre.

Albie now has check-ups every six months but may require more treatment in the future depending on how his heart develops.

Isabella, 18, from Harrogate, North Yorkshire was born with numerous congenital heart conditions and has undergone two highly complex surgeries, the first one when she was just 5 years old.

She and her family are prolific fundraisers, organising multiple events over the past few years including an annual Halloween Ball.

In total, the family has raised £150,000.00 for the Children’s Heart Surgery Fund, the majority of which has been spent on specialist equipment. In a twist of fate, during Isabella’s last operation, she was treated with a piece of equipment which her fundraising had paid for.

Isabella Cook’s picture was on display as part of the Keeping the Beat launch event at the Leeds Club on 19

May.

Isabella was born with multiple heart conditions including transposition of the great ventricles, double outlet right ventricle, interrupted aortic arch and the extremely rare Dextrocardia, a condition which caused her heart to develop on the wrong side of her body.

She underwent her first Fontan surgery when she was five years old and had her final Fontan Procedure aged 15 years old.

After the very complex second operation she went into renal failure and her family were unsure of whether or not she would recover. Isabella’s mum says:

I think the only reason Isabella pulled through that experience was because both the cardiac and renal teams were the same building, only a floor apart in the LGI and because of the healthcare professionals working so effectively.

Isabella has now recovered and is being closely monitored by the hospital as an outpatient. Isabella’s mum continues:

We are so proud of Isabella; she’s a fighter and such an inspiration to her two sisters and all of the children fighting congenital heart disease. We’re really pleased to be able to tell her story and also to support the great work that the charity does.

Isabella adds:

I was really to be involved in the Keeping the Beat Gallery event and to help launch the campaign, as the fund has affected me directly. I want to do what I can to help support Children’s Heart Surgery Fund and the work they do – I’m not sure where I would be today if it weren’t for the great work they do.

Jessica Ives, 28, from Leeds was born with Aortic Stenosis, which is a narrowing of the exit of the left ventricle of the heart.

She underwent a pulmonary graft at the age of 15 at the Leeds General Infirmary and as a result wanted to show her support for the Children’s Heart Surgery Fund by exhibiting her portrait at the

on 19

May.

Jessica did not have any cardiac treatment during the first few years of her childhood and only saw the condition impact on her everyday life when she started to play netball at secondary school. Jessica says:

Contact sport is not really advised for someone with my condition, but I never wanted to feel limited and really enjoyed playing, so I spoke to the relevant people at school to find a way.

In her mid-teens she started to feel her heart condition was having a greater effect on her life and she suffered with fatigue which stopped her from doing some of the activities she wanted to. Jessica underwent the Ross Procedure at the LGI under Dr. Watterson in 2003. Jessica continues:

My stay in hospital is still crystal clear in my memory and it was a really scary time. The hardest part was going into the ward on the Sunday ready to have the operation the following day. Only my mum was allowed to stay with me and that night we both broke down. I think it’s sometimes easy to forget the impact these experiences have on all of the people around you, not just the person being treated. The liaison officers and the rest of the team at the Children’s Heart Surgery Fund are fantastic and go above and beyond what we could have wished for. They are a brilliant team and we will forever thank them for everything they have done for me and my family.

Jessica now lives a fun and active life and does everything a normal 28 year old does. She adds:

 I haven’t had to have further surgery since 2003 and don’t feel limited; there are a few things I can’t do, but I just find an alternative, rather than seeing it as a barrier. I think Children’s Heart Surgery Fund is a great charity and there needs to be more attention given to it to help future generations who will rely on the services that me and my peers have already benefitted from.

Joe was born with multiple heart defects including; transposition of the great arteries, multiple pulmonary stenosis, left ventricular outflow tract obstruction and right ventricular outflow tract obstruction. Joe has been in and out of the hospital throughout his life. He says:

When I was three, I had my first bovine pericardial patch fitted to make my pulmonary artery wider and I then had further surgery to fit patches when I was eight years old. Over the years I’ve had many catheter procedures where I’ve had numerous balloons and stents fitted. I had a pacemaker fitted two years ago after I passed out a number of times – it was so frightening to wake up on the floor and did not know what had happened.

After a 12 week stint in hospital, Joe collapsed at school. But luckily one of his friends remembered about the heart monitor, that can be activated manually, he’d had fitted.

Without my friend’s quick thinking, it would have been much longer before we knew why I was passing out. Since I had the pacemaker fitted, I have never been so fit and well. I am able to play football, do PE and run for the first time in 16 years. Depending on how much more I grow and if the narrowing gets any worse, I may not need any more surgery. Fingers crossed!

Joe describes his earliest memory of his heart condition:

I remember going for a check-up and Dr Parsons explaining what was wrong with me.  I went onto the internet and researched everything he’d told me. After realising what was wrong with me was a lot more complicated than I had thought, I started to try to be a lot happier person. I realised from having a heart condition that you can’t take life for granted and that you have to live every day as if it is your last. Sometimes I just hate life, but I think of all the other people around the world who are a lot worse of than me and I realise I shouldn’t be thinking this because I have a lot of people who care about me and a hell of a lot to be happy for. My mum Sharon and my sister Leah have been there every step of the way. I have been on TV and radio and in newspapers to raise awareness of the Save Our Surgery campaign. I do not see myself as a role model – I am just myself. However, I am honoured to think that, to many parents, I am a role model for their children, and it was a huge privilege to be asked to speak on behalf of all the patients at the SOS demo. Also, I’ve been able to talk to some of the children on the ward and let them know what to expect, and to reassure them.

Because of all the care he’s had, Joe is aspiring to be a paediatric nurse when he’s older and is already a St John’s Ambulance cadet.

I would like to say a huge thank you to all the staff on the heart ward for saving my life a number of times – I really wouldn’t be alive if it wasn’t for them. I owe them loads for what they have done.

Colin Clewes, 35, from Oxenhope, West Yorkshire was diagnosed with congenital heart disease when he was 11 days old.

Since then, over the past three decades, he has undergone two open heart surgeries.

Colin’s picture was on display as part of the Keeping the Beat launch event which took place at the Leeds Club on 19

May, 2016.

Colin talks about one of the first times he and his family arrived at the old Killingbeck Hospital in Leeds, where the Children’s Heart Surgery Fund was originally founded by Duncan Walker:

Luckily for me, when I arrived at the hospital a nurse who had just undertaken a placement with the cardiac surgery team in Louisville recognised my symptoms. I was immediately rushed into theatre for my first aortic repairs, which saved my life.

Since then, Colin has had further repairs to his aorta, and had a patch surgically inserted inside the heart wall. He also takes blood pressure tablets to control high blood pressure and to help with arrhythmia.

In the future, Colin may need to have a valve in his heart replacing but hopes this will not be for years to come. Reminiscing on his experiences Colin adds:

I remember a long time ago someone asking me if I would change my condition if I could. As a child I would have certainly said yes. However, when I was asked as an adult, I realised my answer was no, not for a moment. Everything that has gone before is part of me. Every moment is something I can call upon when life kicks back. The still moments, pauses in conversations with consultants, silences while they do another scan or test. The hardest times have shaped me into believing that I can and it’s down to me getting on with it.

For parents of children with congenital heart disease Colin says:

Give your child belief; with the belief they can achieve anything, they probably will. I am 6’4, 16 stone and far from the weak baby that at 11 days old was in heart failure, fighting to live. The team at the Children’s Heart Surgery Fund has achieved far more than you realise and have always been there when needed. Leeds and the surrounding areas are lucky to have a charity like them.

‘We were totally petrified by knew Ruby wouldn’t survive without this operation’

• Age: 4 yrs
• From: Leeds
• Mum & Dad: Natalie and Alex
• Brother: Ethan, 4mths
• CHD CV: Tetralogy of fallots, pulmonary atresia with ventricular septal defect and overriding aorta

“We didn’t find out anything was wrong with Ruby until she was three days old. She was a very sleepy baby and didn’t feed well at all.

During a routine baby check the doctor told us she could detect a heart murmur but, as Ruby was born six weeks early this was common and we thought it would probably heal on its own. But when the midwife checked Ruby’s oxygen saturation and found out it was only 57%, she was rushed to the neonatal ward at St James’s Hospital and put on a ventilator.

We were devastated – we couldn’t believe our newborn baby girl had been so seriously ill and we just didn’t know. An ECG and heart ultrasound scan and he confirmed the awful news that Ruby had a rare life-threatening heart defect and without surgery, she would die. Ruby was transferred to the heart unit at the LGI and, at that point, our lives changed forever. We didn’t know if Ruby would survive.

She had her first heart operation at four weeks old. A BT shunt was fitted – a temporary measure as she was too small for her full repair. We were able to take her home when she was six weeks old. We knew the repair would follow, but Ruby needed to be a certain size before that could be attempted and she struggled to gain weight. We visited cardiac outpatients every three months and after about a year Ruby was showing signs she needed her next operation as she became blue and breathless and wasn’t meeting her milestones.

I received the phone call I was dreading on December 19, 2010 to say Ruby was now at the top of the surgery list and a bed was ready for her and she needed to go into hospital in two days’ time. There was then a mad rush to see family as we had to cancel all our Christmas celebrations.

Ruby underwent nine hours of open-heart surgery on December 21. The surgeon was very honest with us and said he had no pre-surgery plan for Ruby as her defect was so complex he was going to decide what he could do once he could see her heart. We were petrified but knew that without this surgery she would die anyway.

Handing her over to the surgery team was probably the hardest thing we have ever had to do but we knew she was in the best hands and without this operation… well, it doesn’t bear thinking about. After the longest day of our lives, we got the call to say she was out of theatre and recovering in intensive care and seeing her again was such a relief. She was so pink and looked so well. Ruby recovered well and was off her ventilator and breathing by herself after just 14 hours, and was back up in the ward two days post-op.

We took Ruby home six days after her surgery and she has come on in leaps and bounds. She has now caught up with all the other children in her milestones and gained the weight she needed very quickly. The difference in her was amazing. Today Ruby is a lively, busy chatterbox who does not let her condition stand in the way of leading a normal life.

She attends mainstream school, is excelling in her learning, loves being around other kids and has made lots of friends. She knows her limits and knows when to have time out to rest and she has coped so well with what life has thrown at her so far. It was a massive shock to be told how poorly Ruby was and what would face us for the rest of her life. We struggled at first to accept her condition as we didn’t know what the future would hold, but Ruby soldiered on and was such a happy baby. We knew we had to stay strong for her.

With the support of our family, friends and all the staff at the unit, we made it through the other side. I underwent counselling through the hospital in the run-up to Ruby’s second operation – this helped me a great deal and I know that service is available to us if we ever need it again. My advice to any other parents going through this is to stay strong and accept all the advice and help that is available to you as it can help so much.

We went through some very tough dark days but we had to be positive and put our daughter’s life in the hands of the doctors and surgeons. Without them, Ruby would not be here today. We have had many cardiac outpatients appointments, and I’m nervous every time we go. We know that she will need more surgery within the next couple of years but we’re not fazed. She is in the right hands. She has done amazingly well and we are so proud of her.”

Hayley Tyler describes the survival battle faced by her brave daughter Phoebe…

‘I wanted my girl to have a chance of life, even if her hopes were slim’

• Age: 2 yrs
• From: Rotherham
• Mum: Hayley
• Siblings: Jake (13), Alicia (11) and George (6)
• CHD CV: Double outlet right ventricle, patent ductus arteriosus, ventricular septal defect, patent foramen ovale and pulmonary stenosis

“I was over the moon when my 20-week scan showed I was having a baby girl – but then the news I got when they looked into the scan was devastating. I was told my little baby had congenital hydrocephalus (fluid on the brain) and that there was concern about her heart. I’d never heard of congenital hydrocephalus so went home in shock and worry.

I was asked if I wanted to abort the pregnancy because the baby had more than one health issue, but all I wanted to do was give my daughter the chance of life – even though I knew that her hope of surviving was slim. We were referred to the heart unit at the Leeds General Infirmary, where she was diagnosed with double outlet right ventricle (DORV), patent ductus arteriosus (PDA), ventricular septal defect (VSD), patent foramen ovale (PFO) and pulmonary stenosis.

Phoebe Rose was born prematurely at 35 weeks, weighing just 4lb 13oz. When my waters broke I was rushed by paramedics to the Leeds General Infirmary for an emergency c-section. Phoebe was just two weeks old when she had her first operation – a VP shunt was fitted to drain excess fluid from her brain. She had her heart surgery at 15 months old to repair her DORV, perform a left fallots-type repair, and to close some VSDs.

Words can’t describe how I felt, it was like my world had come crashing down. She went down to theatre at 8:45 in the morning, and I held her in my arms until she went to sleep. After six and a half hours I finally got the call I’d been waiting for – Phoebe had come out of surgery and all had gone really well.

Even though I knew what to expect, nothing could have prepared me for what my little girl would look like attached to all the drains, wires and machines. It was mentally draining – I longed to pick her up, cuddle her and feed her, but I knew I couldn’t. As she recovered she had visits from her nan every other day, who was looking after Phoebe’s brothers Jake and George and sister Alicia. Phoebe was difficult to handle back up on the ward because of her size, but she got all the nurses after her – she’d frown and give them very stern looks!

Eventually, we came home – Phoebe left with a wound infection so had to have antibiotics and weekly visits back for check-ups until it cleared up. Phoebe’s future is looking good. It’s not far off a year and a half since her surgery. She will need more surgery, probably when she’s in her teens. We have to keep an eye out for blockages with her VP shunt on her head – she had a blockage when she was about six months old and had to be rushed back into theatre.

But, considering we didn’t think she would walk or talk she is doing everything and is so bright – she’s amazed everyone. She has got some developmental delays, but she just keeps going. She’s a very friendly little girl and is always smiling and chatting (although she does have a temper on her when she’s in a mood!).

She brightens up any room when she’s around – she loves her mum and brothers and sister, and adores her nan and granddad. As a heart parent, my advice to anyone else in my position is to keep strong, because you will get through it. The staff are like your extended family, and are a shoulder to cry on if you need them. You learn to live with the worry and try to treat your heart child just like any other child. I’m one lucky mum to have Phoebe – she’s my little miracle.”