“Hi, my name is Harry Austin and I’m writing this, with the hope that it will give some hope and comfort, however big or small, to children with congenital heart problems.”
I was born with a coarctation of the aorta and a bicuspid valve in August 1999 and in the October of 1999, I underwent surgery to have my coarctation repaired.
Due to the amazing work of all the surgeons, doctors and staff at the LGI, and the love support and strength of my amazing family, the surgert was very successful.
Thankfully, this meant I haven’t had to have any more heart surgery.
I am currently a very active and fit 22 year old man who lives a very full life.
I am about to start my master’s degree, in political theory, in September this year, having graduated with a degree in politics in 2021.
Harry with his mum at the LGI after open heart surgery at 2 months old.
I hope sharing my story and experience of the Leeds Congenital Heart Unit and how me and muy family were supported by Children’s Heart Surgery Fund helps serve as an example to children who are experiencing things similar to what I have.
I would like to say that even though they might be going through one of the cruellest and unbearable experiences imaginable, no matter what you can overcome it and live a full, happy and rewarding life. Just like I did and am.
Thank you to CHSF for allowing me to share my story, and thank you to all the doctors, surgeons, and staff at the LGI that saved my life 22 years ago – and continue to save countless others.
All your work doesn’t go unnoticed, and you and your work is extremely appreciated. Myself and my family will be forever grateful. Thank you. ❤️
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
SCAR SELFIE
Every scar tells a story.
Thank you for celebrating your scars with us and showing the world your Scar Selfie!
Every year on #NationalSelfieDay (21 June) we ask you to share a snap of your scar using the hashtag #ScarSelfie.
Why? To raise awareness of congenital heart disease, fundraise for CHSF and empower the world to celebrate their scars.
How to get involved
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Snap a new #ScarSelfie or find a photo of yourself showing your scar. (This could be recent or you as a baby.)
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Tell your scar story to family and friends on social media
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You could even add your photo to a #ScarSelfie fundraising page to encourage donations from family and friends!
Share your scar selfie with pride in a social media post on Wednesday 21 June. Don’t forget to use the hashtag #ScarSelfie and tag Children’s Heart Surgery Fund in your post!
Find CHSF on social media and don’t forget to tag us in on the day.
Tell your Scar Story on JustGiving
Make a donation
Scar Selfie is a celebration of heart warriors of all ages and the life saving work of the Leeds Congenital Heart Unit.
Make a donation to Children’s Heart Surgery Fund to ensure we can continue being there for the thousands of babies, children and adults living with congenital heart disease in our region.
Thank you.
Written by heart mum, Ashleigh Short
“When I was pregnant we found out that our precious girl would be born with coarctation of the aorta and that she would have to go through open heart surgery at only a few days old.
This was the hardest thing we’ve ever had to deal with. We are from Scarborough, but under the circumstances I had to give birth at LGI…”
30 March 2022
We welcomed our beautiful girl Raven Valerie.
31 March 2022
I was sent home for 10 days due to testing positive for COVID-19 but I knew Raven was in good hands being cared for on Ward 43 – the Neonatal Ward.
6 April 2022
I received the best phone call from Bex on Ward L51 (HDU). Raven had been moved and I was allowed back to be with Raven as I had tested negative for three days. Raven and I were in isolation on the ward until our full 10 days were over.
When my husband and I arrived back on the ward we were told that Raven’s little heart was a little more broken than we first thought – and that there was a Plan A and a Plan B for surgery.
Plan A was the best option, and they were 70% they could perform this. Plan B was the Norwood and if I’m honest that scared us!
Raven Valerie was born in March 2022 at Leeds Children’s Hospital.
Raven was moved from neonates to the children’s heart ward a week after she was born.
Raven underwent open heart surgery at 19 days old.
15 April 2022
We were taken down to PICU as Raven’s heart was slowly giving up! The medication that was helping keep her heart working needed to be upped quite high and due to this she could have apnoeas. This was a scary time for us! She did really well for a baby that was on such high medication.
17 April 2022: Consent for surgery
We met Mr Osama Jaber, Raven’s hero! He explained everything he could about the surgery – the pros, the cons and everything in between. He didn’t know what procedure he would preform until he got into theatre and looked at Raven more closely.
18 April 2022: Surgery Day
Raven was taken down into theatre at 9:15am. After what felt like a lifetime, Mr Jaber called us at 3:05pm to tell us the best news. He had been able to perform Plan A and Raven coped very well during the operation. We cannot thank Mr Jaber and his team enough for saving our beautiful girl!
29 April 2022: Home time!
Raven had a very good recovery and after another 11 days being cared for between PICU and Ward L51 we were finally discharged and were able to be at home as a family of four.
Massive shout out to all who were involved with Raven’s care! The midwives, nurses, student nurses, doctors, consultants, registrars and, last but not least, Mr Jaber!
We would also like to say a HUGE thank you to Children’s Heart Surgery Fund for everything they have done for us while we were away from home. This journey would have been a lot tougher if it wasn’t for this amazing charity. We appreciate everything.
Raven Valerie was born in March 2022 at Leeds Children’s Hospital.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
written by Kathryn’s daughter Deborah
Children’s Heart Surgery Fund is close to our hearts as Millie (my daughter, Kathryn’s grandaughter) was born with Tetralogy of fallot in September 2005.
It was then we were thrown into a whole new world that none of us knew anything about.
Millie had her first shunt operation at a few months old but before that she underwent an operation to unblock her bowel. In May the following year she was also diagnosed with a subglottic stenosis where she had pioneering surgery to take rib cartilage and stitch into her windpipe to reopen her windpipe.
Millie underwent her first open heart surgery just after her second birthday. She then had open heart surgery again 11 years later, in May 2019.
Millie in hospital, 2007
Millie is a keen musical theatre performer, attending performing arts school as well as horse riding and many other activities.
It’s thanks to the Leeds Congenital Heart Unit, the amazing surgical staff, nurses…in fact everyone involved in her care that she has grown into the wonderful person she is.
We hold CHSF close to our hearts for the amazing support they provide parents and families who are thrown into the congenital heart world!
We have done fundraising for CHSF in the past. My mum – who also worked in theatres at the LGI until her sudden passing on 13 March – also supported the cause as Millie was the apple of her eye.
Despite her own 45 years working for the NHS in theatres as senior sister/nurse etc she held colleagues involved in the care of these special heart babies and children in very high regard and was eternally thankful for what CHSF have all done for us as well as other families.
So, a fitting tribute to mum and CHSF was to collect donations in lieu of flowers at her funeral. Most of the contributions came from her colleagues and friends who work at the LGI and Pinderfields, where Millie’s grandad also works in theatres and has also given 50 years of service to the NHS.
Deborah and Millie, last month at LGI
A wonderful £530 raised for our heart unit, patients and families in memory of Kathryn Bedford.
Thank you so much to all of Kathryn’s family, friends and colleagues for thinking of Children’s Heart Surgery Fund at such a difficult time.
We are so very grateful for your generous donation in support of our work supporting hearts for life.
We can only do what we do because of people like you.
Donating in memory is a touching way to remember a loved one, celebrating their life and supporting a cause which was important to them. You can read more about donating in memory here or get in touch with the team on 0113 831 4810 | info@chsf.org.uk
READ MORE…
Sawda is six years old and lives in Bradford. She was born with a very complicated heart condition and has already had several open heart surgeries to save her life.
Mum Attika tells us about Sawda’s journey with CHD so far and how she has been helped by CHSF along the way.
Sawda’s Story
Written by mum Attika
Before Sawda, I had a child with a complicated heart condition, and I lost her. I was told then if I had a child again, I was to have congenital fetus heart scan. That’s how I found out Sawda had a heart condition, at my 16-week scan.
Born via caesarean section, we were then told Sawda had a very complicated heart condition that consisted of a number of different heart defects:
• Double outlet right ventricle heart disease that is present from birth (congenital) The aorta connects to the right ventricle (RV, the chamber of the heart that pumps oxygen-poor blood to the lungs), instead of to the left ventricle (LV, the chamber that normally pumps oxygen-rich blood to the body)
• Transportation of the Great Arteries A condition where the two main blood vessels leaving the heart, the pulmonary artery (which takes blood to the lungs to pick up oxygen) and the aorta (which takes blood from the heart to the body) are swapped over or switched.
• Pulmonary Stenosis When the pulmonary valve (the valve between the right ventricle and the pulmonary artery) is too small, narrow, or stiff.
• Ventricular septal defect There is a hole in the wall (septum) that separates the two lower chambers (ventricles) of the heart. This wall is also called the ventricular septum.Sawda’s heart condition was too complicated to be corrected. She initially underwent a palliative procedure to improve the blood flow to her lungs called a Blalock-Taussig (BT) shunt when she was 10 days old.
Sawda at one week old
At only 10 days old, doctors decided they needed to operate on Sawda to try and save her life.
Before she was born, we were told Sawda might need surgery straight after birth and on day 11 she went into theatre, critical. We were told to hope for the best.
The surgeon who performed Sawda’s operation said they didn’t know how she made it out from theatre alive. They thought they would be coming out with bad news. Sawda’s oxygen levels were at 30% when she went into theatre – when she was born her oxygen levels were 90%. We were told after surgery we would have to wait a bit to see if she would have further problems as her oxygen levels had been so low.
One day after her surgery, Sawda was off the ventilator and the BT shunt procedure had started to show it was working. After this her oxygen levels increased, up to 90%, and we were home just 14 days after surgery! Sawda was seen regularly by the hospital until her next surgery a year later.
At 8 months old, Sawda started to get poorly
Sawda in hospital, the day before surgery
We knew that, although initially successful, the BT shunt wouldn’t grow with Sawda. The BT Shunt is a small plastic tube, only a few millimetres wide, that is used to create a pathway for blood to go from the heart to the lungs.
As Sawda grew and got more active, her oxygen levels started to drop. Levels would get to around 60% but doctors wanted Sawda to grow a little more before they operated on her next.
In March 2016, Sawda got ill. She had a temperature and was vomiting but it was important Sawda did not dehydrate because her BT shunt would get blocked. She vomited for a whole day and her temperature wouldn’t come down, so we went to our local hospital.
Unfortunately, Sawda got seriously ill while in Bradford hospital – she caught Nora Virus A and B. As days went by, her oxygen was getting lower, and she was getting bluer. Doctors and nurses did everything they could, but nothing worked. She was on 100 litres of oxygen, but her levels were not getting above 30-40%.
It was then that Bradford said they couldn’t do any more for Sawda and she would need specialist treatment. She was blue lighted to Leeds at 1am where she was admitted to Ward L51.
After we arrived at Leeds, Sawda was scanned, and we found out the problem. Her BT shunt was blocked due to her dehydration and that was the reason her oxygen levels were getting worse. Treatment started through the night where doctors prescribed Heparin to help reduce the blockage in the BT shunt.
In the days to follow, Sawda’s condition got worse. She could only have surgery six weeks after her Nora Virus infection, but for Sawda it had only been two weeks. That meant for four weeks we had to just wait it out in hospital.
Every day was a test. Doctors couldn’t do anything more; it was just a waiting game. Sawda’s oxygen levels were down to 20% on 200 litres of oxygen, and we were told again that she could develop a lot of problems with her levels being constantly so low.
It was four weeks post infection when Sawda flat-lined. We were told they would have to take her into theatre for a procedure. They told us they hoped that it would work for Sawda but if not, they were really sorry. It was the same surgeon we had met previously. The same words, “I will try my best”.
The four hours we waited were agonising; waiting for our daughter back. The procedure she was having was called the Glenn Shunt procedure. This operation replaced her BT shunt with another connection to the pulmonary artery.
Sawda did well and she was off the ventilator quite quickly. Her oxygen levels picked up and she was allowed home after just a week.
Sawda after her second heart surgery
From 2016 until 2021 Sawda was still seen regularly, but Sawda carried on with life. She travelled to Pakistan to see her grandparents. Went to Turkey and Morocco. She was doing things like a child her age should be doing. She found school hard as she couldn’t run like other children. She got breathless easily, she couldn’t go on school trips along with many other problems.
It was decided Sawda needed surgery again and 2021 was the year we were waiting, and the year Mr Osama Jaber came into our life. A person we as a family are forever grateful for. He gave me Sawda back.
Sawda had here third heart surgery in 2021
We received our date for surgery. 9th September 2021 was the day Sawda was going to be operated on again.
Mr Jaber told us had a number of plans for the surgery, but he wasn’t completely sure until he had Sawda open which plan he was going to through with.
13 hours we waited to find out if Sawda was going to make it. She did make it and I was hoping and praying that now this surgery would give her a good chance at life.
Sawda had a Biventricular Repair. This repair involves converting a patient’s heart that has been treated with single ventricle palliation to a heart with two pumping ventricles.
After this major surgery, Sawda had many ups and downs, but she made it through. We know that without this surgery, Sawda had no life.
Sawda will need more surgery in various stages of her life, but she won’t needing major surgery like she had in September 2021. We are forever grateful.
Sawda went back to school in November. She’s now really excited to be able to participate in PE and she’s the happiest I’ve ever seen her. As she got breathless so easily, she used to hate going to school in a pram, but she walks to school now.
The smallest things can make a child like Sawda happy. For example, she played in the snow recently for the first time ever. We didn’t have to worry her oxygen levels dropping or if she would catch a cold.
Children Heart Surgery Fund has helped me so many times. I had never heard of CHSF until I got pregnant until 2014 and I met someone from the charity when I gave birth to my daughter on the Neonatal Unit. They sat down with me and just talked. It was just a random talk as to how I was feeling and how I was coping.
Sawda ready to go back to school in Nov 2021
CHSF told me they had accommodation in the hospital that I could use because I lived far away, and my daughter would have to stay a while in the hospital. The accommodation was a great help – especially during the days she was critical. The welcomes packs are also such a sweet gesture from CHSF, especially when you come to hospital in a hurry, and you don’t bring much with you.
Family Support Worker Sarah looks after heart families whilst ont he ward as well as once they go home
Sawda dressed as Mr Jaber for Hero Day
I personally am a coffee addict – without it I can’t survive! When things are tough, coffee keeps me going and that’s how CHSF got me to open up to them.
CHSF’s Family Support Worker, Sarah Cherry, I have no words for her! I met Sarah in September 2021. A fantastic team like CHSF need hardworking staff members who go above and beyond for the families on the ward. I can say they have definitely found that in Sarah Cherry.
Sarah really helped me cope when I was told Sawda wasn’t going to make it. She just listened, and we talked about random things that day I will never forget. I was at my lowest. If I didn’t have Sarah that day, I don’t know what I would have done as my husband had to go back home as our other daughter was unwell.
Sawda left the ward in October 2021 and I’m still in contact with Sarah today.
We are forever grateful for every person we have met through this journey.
DID YOU KNOW?
Over 17,000 babies, children and adults from all across Yorkshire and N. Lincolnshire are treated at the Leeds Congenital Heart Unit every year.
The world-class facilities at the Leeds Congenital Heart Unit have been supported by CHSF since 1988 but sadly, the fact remains that poorly children with critical heart conditions are still born every day in our region. In fact, almost 1 in 100 babies are born with a heart defect.
Please help us to continue saving the lives of young heart patients like Sawda by donating to Children’s Heart Surgery Fund.
MORE REAL STORIES
Heart warrior Isabel is 8 and lives in Worksop. She had open heart surgery at Leeds when she was 3 months old.
Mum Natalie tells us about Isabel’s CHD journey, her daughter’s diagnosis of Autism and Sensory Processing Disorder and the challenges of treating both conditions together.
Isabel’s Journey
told by heart mum Natalie
After attending my 36 week scan at Leeds, we were told it was time to deliver. Isabel arrived at 2:43pm on 29th November 2013, baffling the doctors who expected her to be “blue baby”. Isabel’s diagnosis before birth was Transposition of the Great Arteries (TGA), Double Outlet Right Ventricle and further ventricular septal defects (VSD).
Due to having a c-section I couldn’t get out of bed for several hours, so my husband went to sit with Isabel and took some videos of her. At this point, Isabel was on the neonatal ward whilst I was three floors below on maternity.
I remember him coming back and saying the doctors would like to speak to us. It appeared that after her scan that her heart condition, although still serious and complex, isn’t what they first thought. Meaning she wouldn’t technically need surgery within days of being born.
Isabel after open heart surgery at 3 months old
After speaking to the cardiologist, she explained that Isabel still had a rare and complex heart condition, but it wasn’t TGA. She actually had Tetralogy of Fallot, Double Outlet Right Ventricle and VSD.
Isabel wasn’t blue and so therefore didn’t need the balloon fitting and wouldn’t require surgery straight away. We were however told that she could have cyanotic spells, where her oxygen levels drop. Isabel left Leeds at six days old and was transferred to our local hospital in Worksop for a further week’s stay.
Everything was fine with Isabel’s heart, we had just a few hospital stays due to jaundice. Then in February 2014 things started to change. We saw her cardiologist Dr Perez at Worksop and Isabel appeared to have a spell whilst he was examining her. Again, we were told about the threats of these spells and to look out for them.
“CHSF have been amazing over the last eight years. Especially for providing us with accommodation as we live 50 miles from Leeds”
Two days later at home Isabel was consistently having cyanotic spells. Loud piercing screams and her whole body was blue. We took her straight through to A&E who had Isabel hooked up to monitors. They had her white heart file in hand (file given to all parents) and they were on the phone to the emergency cardiac doctor in Leeds.
The doctor in Leeds was giving step by step instructions to our local A&E on what needed to happen, and they had the air ambulance on standby if they couldn’t stabilise her.
Thankfully they got “Propanol” sent over from Sheffield – a medicine to keep Isabel’s heart calm – and she was later transferred to Leeds by Embrace, the Children’s emergency ambulance team. I was allowed to go with Isabel and had been told that on arriving in Leeds Isabel may need emergency heart surgery.
Isabel was discharged three days after arriving but then underwent life-saving open heart surgery on 18th March 2014. Isabel recovered well and was able to go home six days later.
Isabel recovering after open heart surgery
Isabel, 8, loves being outside and on the go!
Isabel is now eight years old and she has had two further visits to Leeds. First in May 2018 for a sedated echo and in December 2021 for an MRI.
Looking at Isabel it’s hard to tell she has a very complex heart condition/heart defects. Her heart is now over enlarged on the right hand side and didn’t reduce in size after surgery. She also has two very leaky heart valves that are closely monitored every six months. Hopefully the MRI will show when more surgery is possibly needed.
Isabel was diagnosed with Autism and Sensory Processing Disorder just after her 4th birthday. She is also non-verbal with lots of sensory needs.
Isabel is a very active little girl who loves nothing more than to be constantly on the go so for that reason she finds hospital appointments to be quite stressful. She loves to be moving about whether that be climbing, jumping, running etc. We were told a few years back if she wasn’t as active as she was then she would have needed her next operation by now.
The heart ward go above and beyond to make Isabel’s hospital visits as stress free as possible
When Isabel was in for her MRI in December the play specialists went above and beyond in making sure Isabel was comfortable and settled on the ward. They had previously met Isabel for her sedated echo 3 years earlier. They made Isabel’s bed all sensory for her.
This included lights that could be changed and sensory toys that helped relax Isabel for her time in hospital. We often distract Isabel with our iPhones or bubbles or strawberries. When she is having a scan, she’s ok until she feels the jelly and then it is a struggle to get Isabel to lay still and cooperate.
We will tell Isabel she’s going to the hospital the night before appointments so she’s aware of the change in routine. Isabel is always happy to take her clothes off for her scans due to clothes being a sensory issue for her.
We would like to thank Children’s Heart Surgery Fund for everything they do in supporting the Leeds Congenital Heart Unit.
Your support has been amazing over the last eight years. Especially for providing us with accommodation. We live 50 miles from Leeds, so this was one thing we didn’t have to worry about!
Photo: Isabel with the CHSF heart tree outside Ward L51
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart families tells us your story will help other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF. Share your story here.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
The McCombe family were just settling in at home as a new family of four when the midwife noticed something wasn’t quite right with baby Freya.
Freya’s mum, Holly, tells us about their journey with congenital heart disease so far and how Freya and her family have been helped by CHSF…
Freya after open heart surgery at 10 days old.
Heart mum Holly says…
Freya was born on 02.02.2020, and we could not have been happier to have completed our family with a little girl to join her almost two year old brother Finley.
We were discharged home from hospital the following day and were settling into family life at home as a four.
When the midwife came to do her first checks the following day, we noticed Freya was jaundiced so we were sent into our local hospital in Doncaster for some blood tests.
It was only then, when a routine set of observations were taken, that we realised that Freya was actually quite unwell. Her oxygen levels were very low at 82% and wouldn’t rise to acceptable levels even with high levels of oxygen.
After numerous examinations and consultations, we were transferred in the early hours of the morning to the Leeds Congenital Heart Unit at Leeds Children’s Hospital by the embrace team.
On arrival, Freya had an echo scan, and it was then that she was diagnosed with Total Anomalous Pulmonary Venous Drainage (TAPVD). We were informed Freya would need open heart surgery and she was cared for between PICU and Ward L51 until her surgery took place at only 10 days old.
She recovered amazingly well following her surgery. She was off the ventilator only six hours after her operation and was stepped down from PICU to HDU the next day. Just four days following surgery we were discharged home.
“…we had so much support from Children’s Heart Surgery Fund to help us through some really tough days.”
As Freya’s congenital defect was not discovered until after birth, her diagnosis came as such a shock to us. We had to leave her brother Finley for over two weeks, and we had so much support from Children’s Heart Surgery Fund to help us through some really tough days. From little things such as coffee vouchers and toiletries to larger things such as helping us secure accommodation during our stay.
Freya shouldn’t need to have any more surgery, as long as her grafts grow with her. She is now just requiring a yearly echo for monitoring her condition.
We will forever be grateful to the staff at Leeds and CHSF – they will always be a part of our life. We now fundraise yearly and cannot wait to take part in the family activities as Freya grows.
Words cannot explain how proud we are of our little heart warrior.
Freya the morning before her second birthday, because of you!
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart families tells us your story will help other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF. Share your story here.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Colin Clewes is an adult CHD patient and owns Pennine Signs in Mytholmroyd, West Yorkshire! Colin has had a coarctation repair, a partial anomalous pulmonary venous drainage repaired and he has a bicuspid aortic valve.
He has been a huge CHSF supporter over the years, including numerous free printing projects, and is now helping us forge our charity future as our newest Trustee!
We spoke to Colin who told us about his journey with CHD so far and how that inspires him on the CHSF Board of Trustees…
When did you find out you had congenital heart disease?
I don’t think there has ever been a moment in my life that I could say I found out I had congenital heart disease. There were conversations I can remember with consultants and my parents as I sat there as a child, and over time you just become aware.
My condition was diagnosed when I was just 11 days old when I suddenly became extremely ill and had to be rushed by my parents to hospital. Luckily for me, a nurse who had just undertaken a placement with the cardiac surgery team at the hospital in Louisville recognised my symptoms and before my parents could blink I was in theatre having the first of my aortic repairs.
Since that day, over 41 years ago, I have undergone two more open heart surgeries, both at Leeds back in the day when everything was at Killingbeck Hospital.
Colin at 1 month old, 20 days after his first open heart surgery
Did you think your CHD would ever limit you in what you wanted to achieve in life?
Maybe it’s a Yorkshire thing but getting on with it is so, so important. As such, limiting what I want to achieve has never even crossed my mind. After each operation my parents dusted me off and taught me to get on with life and that has stuck with me to this day.
Colin proudly shared his scar for the launch of CHSF’s Keeping The Beat campaign in 2016
Did you have any further treatment, or will you need any?
To date I have had three lots of surgery. I have a valve that is probably not going to last the course and may need swapping along with the need for a pacemaker, however all being well I hope to avoid any more surgery for a while.
What would you say to parents who have children with congenital heart disease, should they worry about what their children can achieve?
Simply don’t worry. Sounds strange but you can’t change the fact your child has a congenital heart disease. What you can do is teach them it doesn’t need to limit how they can enjoy life.
What is achievement? It’s different to all of us. What I see as an achievement is far different to the person stood next to me, its just a question of perspective.
41 years ago, the impossible in medical terms for congenital heart patients was far different to what it is today. So tomorrow’s impossible will be far different again so please, please don’t limit what you think your child can achieve – as you’re the one then who is then limiting them.
Give them strength, believe for them and they will surprise you without a doubt at just what they can achieve in a fulfilling life.
Is there anything you would like to say about Children’s Heart Surgery Fund?
Yes, the team achieve far more than you realise and have always been there for the LCHU when needed. Yorkshire and its CHD patients are lucky to have a charity like CHSF attached to the Leeds Congenital Heart Unit.
Colin 6 weeks after open heart surgery, 1987
Can you tell us about your experiences of using a Kardia mobile device, funded by CHSF supporters?
I had been suffering with AFib (Atrial Fibrillation) attacks for a while and one of the consultants suggested they arrange a Kardia mobile device to record my episodes during my daily life so they could help consider a better treatment plan. I didn’t think too much of it and a week later it arrived in the post.
What surprised me is when the device came and the note said it had been funded by Children’s Heart Surgery Fund.
Even though I know of the great work CHSF does I didn’t know they helped adult patients as well. It came as a complete surprise at just how much the charity goes to help everyone in their journey with congenital heart defects.
The use of the Kardia device is simple. Hold your fingers to the points on the small device that fits to the back of your smart phone and a medically approved electrocardiogram (ECG) is taken. My use of this device allowed my consultant to suggest a cardioversion and long-term treatment plan. It provided peace of mind and helped with a better understanding of my episodes of AFib.
A Kardia device allows a patient to do an ECG using their smart phone
How does it feel to be a CHSF Trustee?
This is a hard question and in thinking about this has made me think of many experiences over the last 41 years of living with a congenital heart defect. Becoming a trustee feels oddly like coming full circle for me. I can’t really explain it.
The charity was formed when I was just a child and I remember doing a sponsored run back then to help raise money to provide sleeping quarters for parents staying with children in hospital at Killingbeck.
I think becoming a Trustee allows me now to try to ensure the Board has a patient voice who has “time served” in their experiences in passing through the hospital over the years.
Colin now, in 2022
Why did you take up the role?
That’s not a difficult question. Children’s Heart Surgery Fund helps people in so many ways it wasn’t really something I could pass up. As I said before it feels like coming full circle and now the correct time to hopefully be able to give back a little more.
Are you an adult CHD patient, and want to tell your story?
Head over to http://chsf.org.uk/warriorwednesday-share-your-story
We’d love to hear from you. Your story is someone else’s inspiration. Thank you.
MORE REAL STORIES
Heart dad Kapre wanted to make sure his son Raeyaan knew everything about his heart journey when he got older, and so Kapre committed to writing everything down in a book – ‘The Story of Raeyaan’.
In this blog we share the some of the first chapters of this amazing account. The book follows the family’s journey from finding out they were expecting a baby right through Raeyaan’s first treatments and a long stay in hospital during the COVID pandemic. To finally bringing their baby home for the first time.
PROLOGUE
My beautiful boy, Raeyaan. If you are reading this, it’s because I have done what every father should do – raise you into a strong, kind, and loving person. You are finally ready to hear about the story of how you came into the world.
I hope that reading this helps you to realise just how loved you are. Your mum and I’s life so far has been a fairytale – a successful business, a gorgeous wedding, a house to call our own. And then along came you, our firstborn son, our most precious bundle of joy.
Having you was one of my greatest achievements in life. As you read, you will find out that the pregnancy was not plain sailing, and there were plenty of heartbreak and tears along the way.
It has been a rollercoaster of emotions. Through all the ups, all the downs, the guilt and the pain, the ecstasy and the joy, there has been nothing but an intense, overpowering love for you. Having you changed me and my life for the better. Everything I do is for you, including this book.
I hope you enjoy reading this book – it’s a love letter, from me to you.
Love,
Dad
CHAPTER 1 THE BEGINNING OF OUR JOURNEY
A whole year of trying for a baby had taken its toll. Your mother and I were physically and emotionally exhausted, and beginning to lose hope … On reflection, I now understand that perfection takes time – you were destined to be ours, we just had to have patience. The added stress and pressure had a huge impact on the time taken to conceive you, and I wish I could go back and tell myself then it would all be okay.
After a year of trying, medical checks, blood tests, urine tests, fertility tests, and concocting our own science experiments at home with the different home testing kits and lab equipment, we finally got the all clear that there were no medical issues that were preventing us from becoming pregnant – only time and patience were the key.
With the reduction of stress, all of our barriers fell away – two months later, we received the best news we had ever gotten. Your mum was finally pregnant, with the baby we had so desperately prayed for – YOU!
After two devastating miscarriages, your mum was over the moon … Knowing that you were growing in her tummy day by day, filled me with overwhelming hope and love. I lay in bed with her, tears rolling down my cheeks and joy spreading through my heart. My life was complete. I was finally a dad.
CHAPTER 2 THE FIRST SCAN
Our first time seeing you was supposed to be the most exciting time of the pregnancy … Your mum’s belly was getting rounder every day. They were spreading jelly on her stomach for the scan. She was growing you so well and I could not believe that she was bringing me our greatest joy in life.
We waited with bated breath, and finally heard the sound that filled us with relief – your heartbeat, the confirmation that you were alive. It was music to our ears. Our joy was short lived. The nurses, who were once chatty and bubbly ladies, suddenly started whispering to each other tensely. We could feel our hearts sink. You could cut the atmosphere in the room with a knife.
They slowly zoomed in to where your heart was located, and I could feel my stomach turning in knots. When they fetched another nurse to confirm their opinion, I could feel a lump in my throat beginning to form. I squeezed your mum’s hand tightly and tried to take deep breaths. Whatever came our way, I knew your mum and I would work as a team.
They finally confirmed to us our worst fears – your heart wasn’t presenting as normal, and they would need a professional cardiac specialist to examine it. They booked us in as soon as possible.
Thanking the nurses, we left the hospital clutching your scan picture, still trying to maintain positivity, but filled with uncertainty about the road ahead of us. Little did we know the twists and turns our journey was going to take.
CHAPTER 3 TETRALOGY OF WHAT?
Each appointment brought us a fresh wave of worry that we would hear the worst news imaginable. I had to be strong for the family, but inside I was terrified that I would never hold you in my arms.
We sat in a hospital room with two very experienced cardiologists, dressed in white lab coats. Your scan was projected on the screen, and although I was relieved to see your little hands and feet wriggling, I just wanted the doctors to confirm what they were thinking. As they murmured away, rolling the device around your mum’s belly, they stated “Don’t listen to us whilst we talk, we’re just having a discussion about everything”.
As if that was supposed to reassure us. The medical terms they were exchanging with each other seemed as if they were talking a different language – there was no way of us understanding anyway. Realistically, there was a tiny part of us that didn’t want to know.
As your mum gazed at the ceiling, I could tell she had zoned out. I didn’t blame her. Until the cardiologists gave us an official diagnosis, we were still in our happy baby bubble. We were completely in the dark – to your mum and I, we could hear how strong your heart was, thumping away rhythmically during the scan. To us, your heart on the scan looked absolutely fine.
What on earth were the cardiologists going to say? Still, we knew they were the professionals, and we had to have the same patience with discovering your condition as we did to conceive you. Finally, they seemed to make a confident decision, and told us to meet them in the next room. As we walked in, every step felt like walking a mile. Our bubble was about to burst.
“I’m very sorry to inform you that the scan revealed that your baby will be born with a heart problem. The medical condition is called Tetralogy of Fallot, also known as TOF. I’m so sorry to tell you this, I know this must be difficult.”
Although the doctors were speaking, their words slowly faded away, replaced by a ringing in my ears and a heaviness in my heart. Tears began to roll down mum’s cheeks, she began to sob as I gripped her hand tightly. My body and brain was bombarded by emotions – shock; how had this happened to my little baby? Devastation; would you ever live a normal life? Curiosity; what on earth is TOF and why had I never heard of it?
The doctor calmly explained that TOF is a condition where a hole has formed in the heart as the heart has not developed correctly. As a result, there are four defects commonly present: ventricular septal defect (VSD), pulmonary stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy).
We asked an onslaught of questions, which the doctors answered so professionally to try to put our minds at ease. They explained that TOF was linked to a number of other defects, such as a possible Chromosome Defect, narrowing of the heart valve, deformed/ tilted heart, Down’s syndrome, DiGeorge syndrome, low immune system, schizophrenia, learning difficulties, the list was never ending. With each new possible complication, our hearts grew heavier, but we stayed strong for you. It was our only choice.
The doctors said “The good news is, we’ve detected it early, meaning you have the choice to intervene.” I was confused. I heard the word ‘intervene’ echo around my head. I stopped the cardiologist as she was talking. “Sorry, what do you mean by intervene?” “I mean have an abortion.” I felt like I had been hit by a bus. I could not believe that a medical professional was suggesting this. Was the condition really this deadly?
Your mother and I were swamped by an overwhelming amount of pain. It was getting harder and harder to keep calm. This was never, ever an option we would ever consider. Today was without a doubt the worst day of our lives. We had never received news like this before. Our heads were tangled and confused with thoughts, decisions and emotions, crashing into each other repeatedly over and over again.
Realising the look of anguish on our faces, the professionals handed us a cluster of leaflets, and told us to take time to think. For us, there was no decision to make whether to abort or not; after years of trying, hoping, and praying for a miracle, we finally had you and we weren’t letting you go. You chose us to be your parents, and we were going to educate ourselves on how to get you through this. Your life depended on it.
CHAPTER 5 THE NEXT STEPS
A week after our devastating meeting, the cardiologist called us back in to discuss the following options, each of them with their own set of complications:
- Conduct a test to diagnose any syndromes or genetic
problems.- To abort you.
- To carry on with the pregnancy as normal.
As you can see, there was no easy option. The first option would mean a Chorionic villus sampling test, where a sample of the sac fluid inside mum’s belly is taken. Due to the nature of the procedure, there was a risk of 1/150 that it could cause a miscarriage as the sac could rupture. I shuddered at the thought. The odds seemed extremely high when considering your life – were we playing with fire?
The second option was not even an option, we didn’t want to discuss it. Imagine if we aborted you, after trying for a baby for so long, and then finding out we could never conceive again. Your mum and I’s perfect relationship would have been destroyed. The thought of aborting you turned my stomach. It wasn’t happening.
The third option seemed the safest, although the cardiologist tried to be realistic and warned “There is a high chance your baby will have 1 or all of these problems we discussed.” Your mum and I were united as a couple. If you arrived with major disorders and defects, were we prepared to care for you, no matter what? The answer was simple. The answer was yes – NO MATTER WHAT.
Finally, after our decision was made, it was time to tell the family. We went on to explain to the family what we had been talking about and discussing. We shed so many tears sharing the information with our family as every time we talked about it the emotions came flooding back.
Above all, what was clear was how loved you were already, little man. Every family member was so supportive of us, and so excited to meet you. I knew that, surrounded by this love, you could overcome anything.
Read the full book ‘The Story of Raeyaan’ here
Why was it important for you to write this book?
I really wanted to share our family’s story! Especially to share it with the people who have endured the same or similar experiences.
I think if I had this book to read at the time, maybe it would have really helped me understand the journey ahead.
Kapre, Raeyaan’s dad
Do you have a story you want to share? At CHSF, we celebrate the amazing heart heroes and families we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit and the amazing clinics and staffa cross the region. Share your story here.
MORE REAL STORIES
After six months of preparation and a whole lot of heart, the Hall and Varley families of Kippax Leeds put on a super Polar Express themed Christmas Party to raise funds for CHSF.
Children were invited to attend in their pyjamas and the hosting families dressed as Elves and one very special conductor!
We spoke to heart dad Ken Hall and heart mum Natalie Varley about what inspired their families to fundraise for our cause…
We are a group of families based in Kippax, Leeds who all by chance met through Facebook as we all have children with a congenital heart defect. This Christmas Party fundraising event was run by two of these families with lots of help and support from all of our friends!
OSCAR HALL
Oscar was born in 2014 with undiagnosed TGA (Transposition of the Great Arteries) and within a few minutes of him arriving, the midwives knew there was something wrong.
A few minutes later, the ICU support teams came into our delivery room and Oscar was taken away for assessment. Later that evening, we were told that he either had an infection or there was a problem with his heart.
A number of hours passed by and eventually we were greeted by Dr Dominic Hares who explained Oscars condition and what this would mean for him. Due to the nature of the condition, he performed an emergency balloon septostomy to allow the chambers of the heart to mix.
At day 9, Oscar had a full arterial switch performed by Carin Van Doorn and after a few bumpy days, he made an amazing recovery. We were able to come home from hospital around 10 days post op.
Oscar has regular check-ups at LGI and still under consolation with Dr Hares. We will continue to fundraise for the CHSF as we don’t know if he will need surgery again in the future and knowing this charity is here to support us and other families, it helps make the journey that little bit easier.
RUBY VARLEY
Ruby was born in 2009, six weeks before her due date, with no indication at birth there was anything wrong. It wasn’t until her poor feeding, sleepiness and not keeping her feeds down meant more thorough checks. They realised at this stage that her oxygen levels were only reading 57% and she was rushed into NICU.
A cardiologist came to assess her the following day and diagnosed her with complex Tetralogy of Fallot, meaning out of the four defects this condition comes with she had all four of them. We were devastated with this diagnosis, especially when we found that it not only is it incurable and without surgery Ruby wouldn’t survive, but that Ruby would also need continuous surgery and interventions for the rest of her life.
Ruby had her first surgery in September 2009 which allowed us to take her home and meet her family for the first time. She then had more surgery in December 2010 after she deteriorated and was rushed back in. Since then however, Ruby has come on in leaps and bounds. She started school and has done so well.
From 2017 we saw another decline in her health. Ruby started to become tired again and her six monthly check-ups did pick up she was nearing further surgery again. We were able to hold off for another three years as the surgeons hoped that if Ruby could grow a little bigger, they could use bigger valve replacement parts for her heart. This would mean we might go longer again between her next surgeries.
In December 2019 Ruby went back in for surgery and the change in her since then has been astounding. She has shot up in height since and started high school where she is doing really well.
We asked both parents how CHSF has helped their families specifically…
Ken said:
For us, Children’s Heart Surgery Fund helped by providing accommodation in the hospital when Oscar was undergoing surgery. We could see CHSF labels on everything from medical equipment and furniture to essential items like milk and blankets.
Even though we live in Leeds, the accommodation was a huge help as it meant we could be closer to Oscar all the time, rather than travelling home and to the hospital each day.
Natalie said:
During our 12 year journey, CHSF have been by our side the whole time. They have provided free accommodation allowing us to stay with Ruby in hospital and free gym passes if we needed some time out to clear our heads.
They funded the MRI research that Ruby took part in to make the MRI process for young children more bearable; our Katie bear and medal gift for Ruby; so much equipment, right down to the microwave and cups, plates etc in the parents room.
They really do think of everything to make our time in hospital a less stressful and worrying time. We can never repay them for how they have supported us and other families.
Before this event, both families have done lots more fundraising for CHSF on their own.
The Halls said:
We have done lots of different fundraising events for the CHSF from previous Christmas Parties, Oscar has completed a 40 Mile bike ride, we have taken part in the Superhero walks, run virtual quizzes over lockdown and we currently have a few ideas for 2022 to help raise more funds.
… and The Varleys said:
Over the years we have done quite a few things for the charity along with taking part in CHSF events such as the annual Superhero Walk. I completed the Leeds Virtual 10k last year, created a ‘Get Fit, Give £5’ JustGiving link to raise funds for all the walks, bike rides, runs we were all doing during lockdown. We also gifted some money that a family member left from their estate after their passing as the charity was always close to their hearts. We have plenty going on next year too!
What advice would you give to anyone wanting to fundraise for CHSF?
We have had a lot of success with different fundraising events as we have a fantastic community in Kippax. Our advice would be check out your local town/village Facebook page (if there is one), speak to businesses about your fundraising ideas and above all, have some fun.
We have been amazed at the support we have had locally so speak to people in your area as I’m sure there is always someone willing to help.
Without CHSF our heart journeys would be very different, they are amazing at what they do and always think of ways they can help and it really does. The research side alone means the surgery Ruby will be having next will now be done as a day case so the steps that are being taken to improve patient care are just brilliant.
CHSF is an amazing charity and continues to do some fantastic work supporting families, children and the hospital with research and new technology meaning better care for the future.
Thank you so much for the continued support of the Hall family and the Varley family as well as everyone who attended the Christmas party or helped on the day. A huge £2770 raised for our heart warriors, unit and families. Incredible!
Feeling inspired?
If you would like to fundraise for CHSF, we are always on hand to help! Email lisa.williams@chsf.org.uk or call 0113 831 4810 or get lots of ideas by requesting your free fundraising pack here.