Leanne and her son, Noah were both born with heart defects. Leanne tells us below all about Noah’s condition, his time at the Leeds Congenital Heart Unit and how it compares to her treatment at Killingbeck nearly 30 years ago.

Leanne

My first year of treatment was 1990. I was admitted to Hull Royal Infirmary with a suspected virus, and my CHD condition was later detected. I had heart surgery at Killingbeck in 1992 by Children’s Heart Surgery Fund founder Duncan Walker.

My mum remembers Killingbeck providing her with nearby accommodation as she was a single parent from Hull. She also remembers me returning from the surgery covered in ice cube packs and a special silver blanket.

Mum wasn’t allowed to touch me as it would raise my body temperature. (How technology has developed! I was able to kiss Noah and hold his hand the second he returned from surgery!)

Mum very clearly remembers the ward teaching her how to use all the equipment so that she could hold me – disconnecting and connecting machines. Mum talks about how different the ward was back then, it had lots of space and even areas to play outside.

I am very grateful to the ongoing support of CHSF. When my surgery was finished, I was discharged and had no follow up appointments, but I feel the developments in CHSF to support families has made me feel confident having my son Noah. Because of you, we will get ongoing support throughout his life.

Noah

My son, Noah Race-Wordsworth has congenital heart defects including Hypoplastic Left Heart Syndrome (HLHS), an ASD and VSD. Overall a very complex heart condition. At just one week old we were told to take Noah home for palliative care.

While as a family we were trying to decide a plan, a nurse on Ward 51 noticed a fast heart rate, and a few weeks later Miss Carin van Doorn was attempting surgery.

I say attempting as at the time no one thought it would be successful. They thought Noah was too weak to survive, and the surgery if successful would only buy us time.

Signing the consent form was easy thanks to the team, even though I now quiver when I see one, that first one was a life line. We had nothing to lose.

Luckily, we are now 16 months into the journey. The next piece of surgery is very unclear, we are praying for a dual chamber Glenn procedure but the team are unsure if Noah’s mitral valve is strong enough.

We couldn’t have got through this without Children’s Heart Surgery Fund’s help. You helped fund my accommodation – around three decades after doing the same for my mum. 

Without this I would literally be staying in a chair next to Noah. Hull to Leeds is too far to commute. CHSF also helped with small things that reduced stress, such as bottle warmers.

We still have a long, scary journey ahead – three rounds of surgery left for Noah at least, but we are grateful for each and every day.

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

A Facebook Fundraiser lets you raise money on Facebook and Children’s Heart Surgery Fund get 100% of the donations!

Set up a dedicated page and then all you have to do is set your own fundraising goal, add your story (or use our ready made template) and then share with your friends and family. It’s really that easy!

CHSF Supporter and Heart Dad Miguel Moore set up a Facebook Fundraiser around his birthday. He asked friends and relations to give to Children’s Heart Surgery Fund instead of buying him gifts as his family had been supported by CHSF when his daughter Hallie was treated at the Leeds Congenital Heart Unit.

Miguel and his family

Miguel said:

We were told Hallie had a heart defect when my wife was 20 weeks pregnant and our life was turned upside down.

We spent four months on Ward L51 juggling life, two other children and having a very sick child who underwent three surgeries and a cardiac arrest.

During our time on the ward we were supported by CHSF by giving us somewhere to stay, visitors to the hospital, lovely up to date equipment and beautiful toys.

I decided to set up a birthday fundraiser on Facebook with a very optimistic goal and absolutely smashed it by raising £1135!

We couldn’t repay CHSF enough back. It gives us as a family a great feeling raising money for such a fabulous charity. Thank you for everything you do!

Getting set up…

1. Go to www.facebook.com/fund/childrensheartsurgeryfund/
2. Set your fundraising target
3. Choose your end date
4. Say why you have chosen to fundraise (or use our template!)
5. Choose a cover photo or video
6. Get sharing with your friends!

• From: Doncaster
• Dilated cardiomyopathy
• Mum: Kailey

“Kacie was admitted to Leeds Children’s Hospital and diagnosed with dilated cardiomyopathy in August 2008 when she was 10 days old.

Cardiomyopathy is a disease of the heart muscle that makes it harder for your heart to pump blood to the rest of your body. After an increase in respiratory distress she was intubated (given a breathing tube) while a dose of Levosimendan (drug used in acute heart failure) had no effect.

Concerns grew that she needed ECMO (life support) or even a heart transplant, but fortunately she did not require these treatments and very slowly improved with medical therapy. She was eventually extubated just over a month after being admitted, and surprised everyone with her steady improvement. More tests made doctors conclude she’d suffered an idiopathic myocardial infarction. In other words, a heart attack, at just 9 days old.

We finally took Kacie home at the beginning of October 2008 not really knowing what potential there was for further recovery. But at an outpatient appointment in December, Dr Gibbs was delighted to tell us her echo scan looked completely normal. She had somehow made a full recovery!

It was the worst thing we’ve ever gone through as a family, we were young parents – only 20 at the time, and without the support of not only our family and friends but also the staff I don’t know where we would’ve been! They genuinely cared for me throughout Kacie’s stay in hospital – I really struggled at the time.

We stayed in the parent’s accommodation funded by CHSF, which was an absolute godsend and meant we never had to be away from her. We were able stay at the hospital every single night and to be honest we would have been lost without these facilities.

Kacie is now 10 years old and leads a normal life, always full of energy. She loves dancing and recently passed all her dance exams. She’s completely free of medication and her heart still looks perfect. She’s on 3-yearly check-ups now as she’s doing so well! That’s all thanks to CHSF and their supporters.

After Kacie was discharged from hospital, as a little thank you, our family arranged a fundraising event for CHSF and we raised over £3,000. We do hope to do this again in the near future and continue to support the charity.

I also play the CHSF Lottery. It’s a great way to donate to this brilliant charity. For just £1 a week I’m in with a chance to win £100 every week!

We still don’t know how or why Kacie went through what she did but we do know we couldn’t have got through it without the amazing support we had from Children’s Heart Surgery Fund and the hospital. She’s our little miracle.”

• From: Pendle, East Lancashire
• CHD: Hole in heart, Leaky heart valve

My mum and dad were told at the 20 week scan that one of her twins had a heart condition – and in a single pregnancy they would suggest a termination. After further checks the diagnosis was changed but they still didn’t know if I would survive. Due to the expected complications, my brother and I were born in Leeds General Infirmary with heart specialists on hand. I was missing a pulmonary valve and had a hole in my heart.  I had to have regular check-ups as my left lung was severely compressed due to the size of my heart from it having to work overtime. We were told that, as I grew, more space would become available in my chest, allowing me to breathe easier. My check-ups became six-monthly, and then annually, until I got to high school. Following an MRI scan it was decided I needed surgery as my pulmonary artery had become baggy over time and was starting to impede my breathing. Finding out I needed surgery aged 13, rather than at 18 was really scary. I even started to write a bucket list as I was worried I wouldn’t survive. My surgeon explained they would “open me up like a book” and “a machine would do my heart’s job until all the repairs had been made”. I didn’t have time to do anything on my list as a few days later a cancellation came up and I was going into the LGI. I hardly slept the night before and mum stayed with me.  We paced the corridors and wards talking. Thankfully the surgery was a success and six and a half hours later I was in intensive care. I don’t remember much but my twin brother was extremely upset to see me with all the tubes and machines attached. I was so well looked after on the heart ward and I was determined to be well. A week after surgery I was allowed home. My parents never wrapped me in cotton wool, always allowing me to have a go at anything figuring that if I couldn’t do it my body would tell me! One of the things that I started to do was play music. I played a gig the weekend before my surgery, not knowing how the surgery would affect my voice, or me. It took around two months to get back to singing and that was the first time my mum really cried.  She listened to me sing and that’s when it really hit her what we had been through. Life went on as normal with annual check-ups and I wasn’t on any medication. I will need further surgery as my valve will not last forever but in the meantime I am living life to the full.  I continued singing, learnt to play piano and started writing music myself. My first song “Ward 26” was about my experience of heart surgery in 2013. I also started to play guitar.  I am now at college studying music and hope to attend York St John University to continue my studies. My band have just released our first single on Spotify called “I ain’t gunna” as The Switch UK, check it out. We can be found on Facebook as The Switch UK and Odall.

Hello we are The Heart Helpers and we are a group of 10 year olds. We live in North Lincolnshire and all go to the same school. We are taking part in Operation Lifestyle this year and as part of this want to raise the profile of, and raise money for Children’s Heart Surgery Fund.

One of the girls, Ellie, knows first hand the work that CHSF do to support patients with Congenital Heart Disease, and their families. Ellie’s sister Amelia was born with Pulmonary Atresia and Ebstein’s Anomaly, going into theatre for the first time at just one week old. Amelia has since undergone surgery six times, most recently in May, having open heart surgery at LGI.

The group of girls all realised what a frightening time it was for their friend Ellie and her family and so they decided they should get together, spread the word and raise some money for the charity that had done so much for their friend.

The girls put their heads together and came up with so many ideas to fund raise for CHSF. Let them tell you their favourite bits…

Ellie: I really enjoyed helping out with glitter tattoos at Fox Fest. I am really pleased I learnt CPR as we now know how to help people who need it. I loved taking part in the Humber Bridge run – but especially when we walked back at the end with my sister, Amelia and everyone gave us a loud cheer. This made it feel really special!

The Heart Helpers at the Humber Bridge run

Chloe: I loved making the slime, setting up the table for the table top sale and selling everything. I really enjoyed seeing the village coming out to support us. The CPR training made us realise how important it is to know things like this so we can help people. I loved spending time with my friends.

Lots of table top sales!

Holly and Leksi: We loved spending time with our friends while making bracelets together, baking cakes for the cake sale and helping out at Fox Fest.

Baking for a Cake Sale

Connie: I liked helping at Fox Fest as it pushed us to introduce ourselves to people we didn’t know. I loved asking Ellie and her family about their experiences on the ward so that we could put together the leaflet for other parents. It made me realise how sensitive we needed to be and how 3 months after Amelia’s surgery the family still find it a difficult issue to talk about. I loved it when my mum dressed up as Katie Bear and Mrs Franks didn’t fasten her legs together properly, so she couldn’t walk.

Slime for sale | Making CHSF awareness leaflets | Selling bracelets

The parents… We are so proud of the dedication and time the girls have put into the project. They have never grumbled about spending their holidays raising awareness and money and neither have they had a cross word with each other. They have not only learnt new skills, raised money and awareness but they have treated Ellie’s family with respect and sensitivity, as well as bringing the community in which they live together. I’m sure the end of the project will not be the end of the girls fundraising!!

And their fundraising didn’t stop there! The girls purchased craft resources for Ward 51, went along to an outdoor concert to sell bracelets and glowsticks and even bought tea, coffee and refreshments for our family room!

The Heart Helpers have most certainly set the bar high for our fundraisers and we couldn’t be more grateful. They have worked so hard to raise money and awareness for Children’s Heart Surgery Fund and should be very, very proud of themselves!

The Heart Helpers and Amelia with Lisa (CHSF Community Fundraiser)

Children’s Heart Surgery Fund (CHSF) celebrates its 30th anniversary this year and is appealing for urgent help during the holy month of Ramadan.

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3-year-old Esa Khan is from Bradford and has cardiomyopathy, a disease of the heart muscle.

Esa completely stopped eating or drinking after months of illness. He complained of pain in his body and chest and was rushed to Leeds Congenital Heart Unit (LCHU) when local doctors diagnosed his illness.

He has been treated both on the ward and in intensive care for the past 9 weeks and is now sadly needing a heart transplant.

Your donations ensure families can stay close to their poorly children during treatment. Esa’s mother said:

We have been given accommodation to stay in, which is close to Esa’s ward. That’s been a big help since we live in Bradford. I was given room on the first floor, and we have a double room so my husband can also stay with me. Esa has been in the High Dependency Unit (HDU) and monitored constantly which is reassuring.

On top of essential medical equipment and family accommodation, your donations provide ward facilities, extra staff, toys and games to make time spent in the hospital more bearable. Esa’s mum added:

Esa has been given a lot of love from all staff (especially the Play Specialists) and there are so many facilities to help his stay comfortable and easier. He has been given so many toys to play with and loves to look at the fishes and play on the interactive TV. It’s not easy for a 3-year-old to stay this long in hospital, but all this support has really helped him stay settled.

Hanif Malik is a CHSF Trustee and the co-founder of the Give A Gift initiative (a scheme which encourages members of the Asian community to become more involved with local mainstream causes). Hanif said:

Ramadan is partly a period of reflection for those less fortunate than us and Children’s Heart Surgery Fund are a crucial and life-giving support for poorly children from the Muslim community. Our Islamic principles encourage us to support such worthy causes so please donate generously to give them the best chance at a full and happy life.

With your support, CHSF can continue to provide equipment, accommodation and facilities to help improve the lives of other patients within the community.

Donations can help save lives

, and keep the LCHU at the forefront of cardiac care in our region. To donate, visit the website at

or call

.

Small amounts can make a big difference, so please remember CHSF in this time of giving.

From all at Children’s Heart Surgery Fund,

Because of you, we are celebrating 30 years of the charity. To mark this year, we have been asking you to share your stories, finding out who inspired you to become involved in Children’s Heart Surgery Fund. Read on to discover Frankie’s story.

• Age: 7 months
• From: Sheffield
• Mum: Ruby
• CHD: VSD, ASD, Leaky heart valve.

“My son was born at 39 weeks. On all my pregnancy scans, he looked to be normal and healthy. But, when he was born he didn’t wake, feed or cry for the first two days.

He was breathing hard and the staff began to wonder what was going on. I did too as he was my third baby, so I knew what to expect.

The doctor listened to his chest and heard a

. He went for

scans and they found a large VSD, a small ASD and a leak on his heart valve.

On another scan, at 10 days old, they told me he had developed heart failure and they didn’t know if he would make it.

Frankie was then admitted to the neonatal surgical unit at Sheffield Children’s Hospital.

They fed him by tube and gave him medicine for his heart failure.

At 5 weeks old, they transferred Frankie from Sheffield Children’s Hospital to Leeds General Infirmary.

He went in an ambulance, in an incubator, with lots of other vital machines to help whilst we were travelling between hospitals.

The next day, he had open heart surgery to have a band put on his pulmonary artery.

This was to keep him stable enough to grow. We needed to wait until he was big enough for more operations to fix the hole in his heart.

He was then put in intensive care at Leeds. He was on a breathing machine, fed by tube, needed oxygen and had a blood transfusion. It was so scary.

A week later, he was transferred back to Sheffield Children’s Hospital to recover and get his feeding back up.

It was then the staff taught me CPR and how to feed Frankie through his tube.

They gave me equipment such as testing strips, feeding tubes and syringes and I was taught the skills I’d need to look after Frankie at home.

I’ve been caring for Frankie at home ever since. Frankie doesn’t have his feeding tube anymore and is even trying to crawl!

He can roll over and do a few things now and is coming on leaps and bounds.

He still sees various hospital staff for follow up scans of his heart to see how he’s doing now.

Once they feel he’s old enough for more surgery that will be the next step.

Frankie is now almost 7 months old and I can’t thank

(Frankie’s surgeon) enough for doing the surgery that saved my son’s life.

#

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This year, we are celebrating our 30th anniversary – we can only do we what do Because Of You.

We have been asking you to share your stories to help us celebrate those who inspired you to become involved in Children’s Heart Surgery Fund.

Marc Blackburn takes us through his story and his journey with Ethan, from Australia all the way back to Yorkshire.

• Age: 6
• From: Australia / Kippax
• Dad: Marc
• CHD: Pulmonary Valve Stenosis

“My wife Rebecca and I were visiting Cairns, Australia, when we found out the exciting news that we were having our first child.

However, back in the UK at the 12-week scan, they found a problem. Upon further checks, it appeared that our child had a heart problem.

Ethan was born on the 24th of May in 2012. It was apparent in early scans that Ethan had a severe pulmonary valve stenosis.

At four months old, Ethan had a balloon catheter, however, this was unsuccessful. At 5 months old, we met Mr. Jaber at Leeds General Infirmary (LGI), who performed open heart surgery on Ethan to open up the valve.

24 hours later, Ethan was taken to surgery again due to complications.

Thankfully, two weeks on we took Ethan home and all seemed to be going well, to the point that we decided to move to Toowoomba in Australia.

Whilst we were in Australia, it became apparent that Ethan would require further surgery and we made a decision to return to the UK and return Ethan to the care of the LGI.

On the 26th March 2018, Ethan was again operated on by Mr. Jaber who replaced his pulmonary valve.

We were able this time to leave the hospital within a week and Ethan is now recovering well at home.

We cannot thank the team at Leeds enough for their care over the last 6 years, and Children’s Heart Surgery Fund for everything that they do for the heart unit and the families.

The charity-funded accommodation in the Brotherton Wing (at the LGI) is fantastic, the equipment they supply is vital and the events Children’s Heart Surgery Fund organise bring us heart families together.

We have started our own support group for families in Kippax and surrounding area’s and have had family meetups, as well as a night out for parents.

, we know we are not alone in our fight against CHD and I feel that we have made lifelong friends.

This really is a special charity that I feel we will always support. Put simply, thank you for everything that you do for us and families like ours!”

Francesca was treated at the old Killingbeck Hospital 30 years ago. As we are also celebrating our 30th anniversary – we wanted to share Francesca’s journey, from childhood to present day.

• Age: 35
• From: Hull
• CHD: Septal Defect

“I was born with CHD (Congenital Heart Disease) – which I came to know as having a hole in the heart. 

After a number of tests as a toddler, the doctor advised my parents that I needed heart surgery.

The doctor said the surgery was needed before I turned 13 years old, otherwise, I would not live past my teen years.

So, at six years old, I went to Killingbeck Hospital in 1988 for a four-hour operation. 

After the surgery, I recovered in the Intensive Care Unit (ICU). I was in the hospital for 10 days.

I remember spending my 7^th birthday at Killingbeck, but received some great treats and cards, so it wasn’t all too bad! The staff at the hospital were so friendly and I was able to play with the other children on the ward.

Immediately after my operation, whilst in ICU, I saw the scar on my chest, which was a bit scary at first. But even at a young age, I also knew and understood why I had the operation thanks to the staff at Killingbeck.

After a few days, I was transferred back to the main ward to recover.

Around six years ago, I had a check-up at Leeds General Infirmary and was gladly cleared of the defect, meaning the operation in my childhood was a success.

I now live with a scar for life and as much as it’s faded to skin colour over the years, I would feel a little wary if part of my scar was showing.

Saying that I have tried to live life as best as possible. I have always been a go-getter, and aim to be enthusiastic about everything in my life!

In recent years, my involvement with Children’s Heart Surgery Fund has included connecting with many ‘heart warrior’ patients and their families on Facebook and offering support and advice for those who are currently in a similar situation to how I was as a child.

I’ve also created social charity events with raffles and I’ve made a donation to mark the 30-year anniversary of when I had my operation. 

I’m now 35 years old and living life to the full Because Of You. Huge thanks to the Leeds Congenital Heart Unit and Children’s Heart Surgery Fund for saving my life.”

“Because of You

The charity stays open

Treating the next generation

Us heart warriors are alive and kicking!”

On their 20-week scan at their local hospital in Rotherham, Jaxon’s family were told there was a problem with his heart. They found out he had HLHS (Hypoplastic Left Heart Syndrome) and had 3 options:

1. Terminate the pregnancy

2. Go down the surgery route

3. Comfort care (have him full term and let him pass away with no input)

They chose the surgery route, and Jaxon was born at 38 weeks and 5 days at 7lb 2oz.

At 2 days old he started to struggle and surgery was needed. The Norwood Procedure, which should have been his stage one operation, would have been too high risk, so Jaxon had a hybrid procedure to bide him time.

But a couple of days later he began struggling again, so he was taken down for his second open heart surgery to tighten the bands on his pulmonary artery. Jaxon’s mum Jade Louise Heard picks up the story:

At home, 3 weeks later we noticed his scar looked weepy, so we took him back to Leeds where he was put on intravenous antibiotics. Jaxon became clammy and he wasn’t gaining weight, so an NG tube was repassed.Similar to a lot of heart babies, Jaxon suffered severe reflux, and he had really bad episodes where the emergency buzzer had to be pressed for help as he went grey and floppy. In June 2016, he had an echo on the ward which showed he needed an emergency Cath lab procedure due to his PDA (Patent Ductus Arteriosus) closing – it needed to remain open for him to survive. A few hours later we had a phone call – he’d gone into cardiac arrest and needed PICU ventilation. If we had been home that day we would have lost him. Fast forward to his surgery in August 2016. He went down at 8.30am, and eventually at 10pm we had the call. It wasn’t good. Jaxon was critical – he was stuck in bypass and the only option was to put him on ECMO (heart-lung bypass machine). I’ll never forget seeing him – so swollen and so many machines surrounding him. I had to be sat down, the room was spinning and alarms bleeping. I was informed his kidneys were failing and he needed dialysis. I went back to accommodation whilst they were still trying to stabilise him. At 7am, my phone rang again. We needed to go up quickly as he was losing too much blood. He was even more swollen than before and looked so fragile. We were told his chances of pulling through weren’t good so to prepare ourselves, even though the bleed was slowing. Days passed, and despite tiny improvements, we noticed his little toes going purple on his left foot. Something wasn’t right, he wasn’t receiving enough blood to his lower limbs. They thought he was going to end up losing his foot. By now one of his fingers started doing the same. On August 14, his daddy’s birthday, the nurses made a card with his hand and footprints as a surprise for him. We decided on this day to get Jaxon blessed as he still wasn’t good. On August 18, he needed to come off ECMO as he’d caught an infection, and we were told to come and say goodbye to him. However, a specialist came and removed clots on his lungs and his numbers started to improve, could there be hope? He was finally off ECMO and his kidney was slowly kicking back in. Jaxon seemed to slowly improve. Soon after we noticed his head started to swell. Concerns grew and we begin to panic again. There was a blockage in his neck so he was put on blood thinners. A couple of weeks passed and Jaxon started to make movements and take breaths on his own. He’d done it! He’d beat this. He was soon off the ventilator and breathing for himself. The day came. Jaxon was going back to HDU – a day we thought would never see. Day by day he got stronger, but there was a problem – he still couldn’t tolerate milk. So a decision was made to place a PEG-J feeding tube into his tummy for feeds and home was mentioned! We were trained in the PEG-J, medicines, CPR and injections to thin his blood, and after 7 months in total stay we were allowed home! Jaxon managed nearly a year at home before he needed a bigger shunt placed late in 2017. The next stage of surgery will be discussed in a meeting this year (2018). He’s now 21 months old. A bit small for his age, and a little behind in milestones. But he is the happiest, cheekiest little boy and we are so grateful to everyone at Leeds for all the effort they put into giving Jaxon life.

We’re always grateful to hear your stories, primarily to show the importance of the incredible fundraising which enables our charity to thrive.

Your stories also help to raise awareness of CHD and provide comfort to other families. Thank you.