Last month we put a post out on Facebook asking for feedback on the ‘Ambient Experience’ at funded by CHSF.

The Ambient Experience is part of the hybrid children’s heart theatre at Leeds Children’s Hospital. It includes soft lighting, music and films on a big screen. The tech is used to help patients relax and reduce anxiety as they get ready for surgery.

Tom Oliver:

“I’ve been in on with the fishes on the big screens and it help me relax and feel abit more at easy coz it didn’t look like a theatre it reminds me off a fish aquarium.”

“My daughter was operated on last year at 5 months old and was put to sleep whilst I held her watching the fish. I agree with Tom less theatre more aquarium like.”

Alison Tebby-Farrell:

“Last year our daughter had her catheter in the hybrid theatre. It was a much more relaxing experience for us parents than when she was little (she won’t have remembered before).

“We had the sea on the big screens with the music. It gave her something calm to focus on rather than the people and machines whilst we waited for the anaesthetic to work.

“Will be back again soon so hoping to get the same good experience, as she will remember now.”

Becky Cole:

“My little boy had surgery at 6 weeks old so wasn’t aware what was going on but he still had the fish on the ceiling and the whole atmosphere was made much better for me as a worried parent and my mum as a worried grandma!

“It was a fantastic experience under the circumstances! He was the first patient in there as it had only just opened!”

Laura Beckett:

“My son, who is 4 years old and has complex medical needs, had a cath lab in the hybrid theatre. The images of the fish and letting him choose a colour for the room made it easier for him to go in the room. It was loads better!!!!!”

Natalee Hays:

“After many open heart operations and Cath lab procedures (and still only 6 months old (you would think I would be used to my baby going off to theatre and to sleep! Well let me tell you it never get’s any easier!

“But when I took him down for his last cath lab procedure we noticed the big screen with fish and sealife activity and it instantly calmed him and also myself, as it gave us something else to focus on rather than what was going on around us.

“Such a lovely added touch to such a stressful, triggering environment. I think it helped me more than it did Frank!  Thank you.”

This valuable feedback will be used to send on to the special organisations who helped CHSF to make this happen. To say thank you and to let them know how much of a difference their funding has made. Thank you to everyone who took the time to contribute.

More of what you have funded…

Keep supporting our life-saving work

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Dr Malenka Bissell, clinical lecturer of paediatric cardiology at the University of Leeds and consultant at Leeds Children’s Hospital, with the new baby pod.

Leeds Congenital Heart Unit is first in UK to use new ‘baby pod’ for revolutionary research.

A revolutionary new baby MRI incubator at Leeds Children’s Hospital is set to lead pioneering research – the first of its kind in the UK – into babies with congenital heart disease.

Yorkshire Evening Post
By Joanna Wardill
Tuesday, 8th June 2021, 4:45 pm

The potentially life-saving ‘baby pod’ has now been installed at the hospital’s congenital heart unit and is being used for groundbreaking research in a joint project between Leeds Teaching Hospitals NHS Trust and the University of Leeds.

It follows a successful fundraising campaign – publicised in the YEP – by city charity the Children’s Heart Surgery Fund (CHSF), along with donations from funders including the Morrisons Foundation, Heart Research UK and Ilkley Round Table.

The city’s leading clinicians now hope the improved data provided by the baby pod – which combines equipment including an MRI coil and the MRI incubator – may give worried parents an earlier diagnosis for their poorly babies and help predict which patients need surgery in the future.

James Oliver, congenital cardiologist and CHSF trustee, said:

“This exciting new equipment is revolutionising congenital cardiac MRI.

“For the first time, even our youngest congenital patients can benefit from important research into improving early diagnosis.”

Congenital heart disease is one of the most common types of birth defect, affecting up to eight in every 1,000 babies born in the UK.

While survival rates have improved, diagnosis and imaging of newborns can be challenging.

Traditionally, CT imaging has often been preferred over MRI for babies, due to its quieter and faster scan times, while MRI can take an hour, needs patients to hold their breath or be sedated, a risky process for poorly babies.

The use of CT, however, requires a radiation dose and produces less detailed data.

But now, using the latest ‘4D flow MRI technology’, this new incubator will also allow babies to be scanned in under ten minutes.

Thanks to special sound proofing, babies can be transported from the ward to the MRI department and scanned all while asleep.

Dr Malenka Bissell, clinical lecturer of paediatric cardiology at the University of Leeds and consultant at Leeds Children’s Hospital, with the new baby pod.

Dr Malenka Bissell, clinical lecturer of paediatric cardiology at the University of Leeds and consultant at Leeds Children’s Hospital, said:

“It’s really exciting. We are still at the research stage where we’re trying to understand where it will really help but of course ultimately it will mean sick babies need not to have an extra anaesthetic.

“And it will also really help us to learn a lot more about the operations that we are doing and how it changes blood flow. Because we can look at before and after – which we wouldn’t normally have done [because of associated risks].

“The surgeons are really excited about the idea of being able to understand how their different surgical techniques change the blood flow through different vessels.”

Sharon Milner, CEO of the Children’s Heart Surgery Fund, said:

“I must pay tribute to the many trusts, foundations and other funders who helped us purchase this vital technology – thank you for supporting hearts for life.

“This game-changing research will make a huge difference to babies born with heart disease and their families for years to come in our region.”

The MRI baby pod research announcement is the latest feat for the unit after it was last year named as having the UK’s highest surgical survival rates for children.

A report by the National Institute for Cardiovascular Outcomes Research (NICOR) found children who undergo heart surgery in Leeds have better outcomes than anywhere else in the country – with a 99.4 per cent survival rate over a three-year period treating 929 children.

Leeds was the only children’s heart surgery unit in the UK to have a survival rate that was in the highest performance category, being ‘much higher than expected’ for units of its kind in the country.

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CHSF IN THE NEWS

For Mental Health Awareness Week 2021, Senior Clinical Psychologist Dr Rachel Avison has kindly written us a blog detailing the importance of caring for our mental health and how the Leeds Congenital Heart Unit  Psychology team can help.

Dr Rachel Avison writes:

This week is mental health awareness week and a fantastic opportunity to shine a light on taking care of our emotional well-being. Just as we all have our physical health, which we must take care of; we also have our mental health.

At times, life can be particularly challenging and bring about feelings of stress, worry and sadness, these are normal responses and part of being human!

Sometimes feelings come and go and other times they last and can impact heavily on our overall well-being.

Is important to acknowledge that emotion affects everyone, human distress in response to challenging life events is normal and that it is important we care for our own mental health and that of others.

Within the Congenital Cardiology Service we have a dedicated Psychology and Counselling team to support patients and families manage the emotional demands of life with a heart condition.

The team work proactively and aim to meet patients and parents early in their hospital journey to normalise emotional experiences in response to health difficulties and provide early psychological support.

The team see children and adult patients, and family members, both on the ward and as outpatients to help with various difficulties.

This can range from managing diagnosis or adjustment to life with a heart condition.

We can help with working with anxiety in relation to medical procedures or surgery and supporting with distress in relation to a hospital admission, period of recovery or day-to-day life with a heart condition.

The Psychology and Counselling service has been supported by  Children’s Heart Surgery Fund.

The generous fundraising and donations received have helped to provide Psychology posts and resources to help young people prepare for their surgery.

These resources include the ‘Katie Bear Goes to Hospital’ book for younger patients and ‘My Surgery Support Pack’ for our teens and young people.

CHSF emphasise the importance of caring for the mind and living emotionally well alongside congenital heart disease.

If you feel you would benefit from additional support in caring for your mental health in relation to life with a heart condition you can find additional support and advice on the Leeds Teaching Hospitals NHS website.

You can also speak to your Cardiology Consultant or Clinical Nurse Specialist about a referral to the Psychology and Counselling team. You can also discuss any mental health concerns with your GP who will be able to signpost you to local Counselling and Psychological support services.

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BUY NOW

Did you know you can buy your own copy of CHSF’s Katie Bear Goes to Hospital and My Heart Surgery Support Pack on the CHSF online shop?

All purchases help Children’s Heart Surgery Fund to keep supporting our region’s heart warriors and their families.

You can visit the the Psychology & Counselling Service page on the Leeds Congenital Hearts website

Got some questions? Get in touch with the team direct
0113 392 6796  |  leeds-tr.ccpt@nhs.net

WHAT YOU’VE FUNDED…

Back in November, CHSF managed to fund a state-of-the art incubator thanks to generous donations from Trusts and Foundations.

Senior Sister Catherine Livingstone tell us why the Baby Leo  has been such a positive addition to the Neonates department at Leeds Congenital Heart Unit

The baby Leo has been a very valued piece of equipment. I estimate it has been used maybe at least 15 times over the last 3-4 months.   The incubator has been used by term babies who only need it for short term care and then there is the premature babies who are in it for many months.   The baby Leo is a great asset to the neonatal unit – it not only provides the best thermal and developmental environment for preterm babies, it is also very user friendly for both nurses, doctors and parents.   This incubator allows us to provide a quiet, warm and calm environment which allows the babies to use all their energies into growing rather than into keeping warm. This will improve their long-term outcomes and reduce the stay duration.   The hybrid incubator offers a number of state of the art features, especially the ability to nurse the baby with the lid open or closed, depending on what procedures that are being performed, whilst maintaining the correct temperature. It can be personalised with the baby’s name and with different coloured soothing lights.   Parents have given positive feedback on the baby Leo incubator, they have stated that it is a very modern piece of equipment and feel their babies are very fortunate to be nursed in this.   They have expressed that it is lovely that the incubator can be lowered to a point where they are at chair level with parents, improving bonding and well-being. The quiet anti click features on the door opening and lid means parents are more forth coming in caring for their baby as they feel they are not disturbing them.

Because of your amazing fundraising, Children’s Heart Surgery Fund are now able to provide a welcome pack to all families who stay on the children’s heart ward.

In each family welcome pack you will find:

• Toothpaste, toothbrush, Shower gel, shampoo, conditioner, body lotion and wet wipes
• CHSF note pad and pen
• CHSF water bottle
• Lunch voucher: order online have this delivered to the hospital/parent accommodation
• Take a moment bundle: Tea, coffee, sugar and a relaxation strategy card
• Family Support Worker details

Family Support Worker, Sarah Cherry says:

These packs are something from the Heart to let parents know that their Family is at the forefront of our Mind, now and in the Future.

Our Family Welcome Packs have been designed specifically for parents when I child is in hospital.

I hope that during a time of unimaginable stress these packs will offer reassurance and comfort.

To let families know that their wellbeing is important to CHSF and our family service is always there to offer support when needed.

Every item in this pack has thought and meaning and they are essential.

Here in Yorkshire there is a lot to be said for a good cuppa. Taking five minutes over a brew – whether that be tea or coffee – our hot drinks bundle provides a warming five minutes of calm.

The toiletries are a must! If you are like me there will be at least one item you forget especially when there is so much to remember. Some families don’t have a chance to pack these essential items and we have ensured these are readily available for when you arrive.

When our head is so full, writing things down is a must. Use your notepad and pen for those important lists. Those hard to remember medical terms or the names of the lovely doctors and nurses you meet along the way.

I know its hard as parents to put ourselves first, but it is important to take care of YOU. Use our water bottle to keep hydrated and order yourself a healthy nutritious lunch with our meal voucher. A Kit Kat on the go is not one of your five a day !

Finally accept support – I am here for you. All my details are included in the welcome pack when you need them.

Get in touch

Say hello to our Family Support Worker Sarah Cherry
sarah.cherry@chsf.org.uk 07929509227

A big thank you…

A huge thank you to dedicated Children’s Heart Surgery Fund supporter Claire Worsnop.

Claire gave up a whole day of her time to help put together the CHSF Welcome Packs for our families.

We couldn’t do what we do, without awesome people like you Claire! Thank you! #BecauseofYou

Help us keep being there for those who need us most,

Make a donation

More amazing things you’ve funded…

We’re saying a huge thank you to the friends and family of heart warrior Bella Rhodes.

Because of your incredible donations, CHSF have been able to purchase a state of the art surgical camera to be used during open heart surgery.

Thanks to the amazing genrosity of the family and friends of heart hero Bella Rhodes, Children’s Heart Surgery Fund were able to purchase the LookCam2 headlight camera for the Leeds surgical team.

The application was initally made by Bella’s heart surgeon, Mr Giuseppe Pelella and early this week we were able to deliver this exciting package to the hospital.

What is the LookCam2?

Normally, the structures deep in the heart can only be seen by the surgeon who is operating on the patient. With the help of this HD headlight camera other members of the theatre team can gain a better understanding of the procedure that is in progress.

The camera is connected wirelessly to an iPad and the team can see the surgery via a real-time display, on a television screen in the operating room.

• Use of this camera in the operating theatre will improve the understanding of the abnormalities of the heart as well as improving operating techniques.
• If a second operation is needed on the same patient, the surgeon will be able to review operation recordings from the camera in order to further understand complications and increase patient safety.
• The ability to view the surgery in more detail (both during the operation and with review of recorded images) is an important tool for the training of surgeons and other healthcare professionals.
• Submission of papers supported by video footage to scientific meetings and websites will further enhance the reputation of the Leeds Congenital Heart Unit.

Bella’s mum Megan told us what it means to be able to fund this fantastic piece of equipment, for the man who saved her daughter’s life…

We started Bella’s Heart Journey fundraising page when we were discharged from hospital because it was so important to us as a family to be able to do our bit to help support the people who saved Bella’s life.

We have been overwhelmed by the support, kindness and generosity of everyone who has donated to Bella’s JustGiving page, where we have been able to raise such a life changing amount of money.

We would like to take this opportunity to thank every single person who has donated to help support the fantastic work done by Children’s Heart Surgery Fund.

We wanted to raise money for the CHSF because they helped us as a family during our time in hospital and were there as a support physically and emotionally every step of the way.

Bella’s journey is far from over and knowing the work that the charity does is such a comfort for us on our road ahead. We wanted to make sure that other families feel the same comfort and support we did, so being able to help the charity’s continued work in any way we could was so important to us as a family.

We knew we wanted some of the money to be used for a piece of equipment that will help with ongoing surgeries and procedures for heart patients. So when we knew that Bella’s surgeon Giuseppe wanted this specific camera to help support them with future surgeries we knew this was exactly what we wanted Bella’s fundraising to go towards.

Bella after open heart surgery in Dec 2020

Bella with her Katie Bear teddy and medal

We are so happy and excited that this piece of equipment could help potentially save lives and make a huge difference to so many people and families like ours.

As always we cannot thank all the staff at the CHSF and the Leeds Congenital Heart Unit, you are all truly amazing!

Additionally, thank you again for all the generous and kind donations to Bella’s JustGiving page as without you we wouldn’t be sharing this story. We are eternally grateful to you all!

You can read Bella’s full story on our blog here

Bella’s incredible story captured the hearts of so many and her fundraising page has raised a truly amazing £14,790 for CHSF!

To everyone who made a donation, big or small, thank you. Because of you, our surgeons can improve outcomes for CHD patients now and in the future.

#BecauseofYou

More amazing things funded #becauseofyou…

Thanks to your donations, one little boy on Ward 51 had a visit from a fellow superhero and a birthday to remember!

A Ward 51 doctor dressed as Spiderman

We know it’s true to say that small, less costly gifts can make all the difference.

And this is certainly true when the staff on Ward 51 made the 5th birthday of little Arkhan Alkhalifi all the memorable with the help of a fellow superhero!

Along with some lovely presents funded by YOUR donations, his special day was enhanced by a visit from the web-slinger himself with a very special cake!

The cake itself is a special one, made from meringue by LCHU registrar Sally Hall.

Arkhan is on a very special low-fat diet so this fit the bill perfectly!

We know that Arkhan was made to feel really special on his birthday and this is all down to YOU, our amazing fundraisers. THANK YOU!

A huge thank you Ward 51 for sharing this story and the fabulous pictures.

It is only because of your amazing donations that we can keep being there for heart warriors like Arkhan! #BecauseofYou 

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

We made it, together! Thanks to YOUR amazing fundraising efforts we have reached the fundraising target for the MRI Baby Pod.

And we have a lot of organisations and individuals to thank…

We are incredibly grateful to everyone who supported our Baby MRI Incubator Christmas Appeal and the following Trusts and Foundations, individuals and organisations who have all given grants and donations to this revolutionary equipment:

• Barry Brown
• The Charles Wolfson Charitable Trust
• The Grace Trust
• Heart Research UK
• Ilkley Round Table
• The Liz and Terry Bramall Foundation
• The Morrisons Foundation
• The Purey Cust Trust
• Sovereign Health Care Community Programme
• Yorkshire Children’s Hospital Fund

And thank you from the bottom of our hearts for smashing the final £5,000 via our Just Giving campaign! We set this page up over Christmas, and

.

Over half of this final target was raised by the amazing

,

.

This state-of-the-art incubator will allow babies to be transported directly from the ward into the MRI department, where scans can be conducted free from complications and distress.

It will also give clinicians the opportunity to add extra equipment to also make it safe for sicker babies to have an MRI scan.

Amidst a challenging year for so many, Children’s Heart Surgery Fund have continued to be there for heart warriors, their families and our incredible heart unit – and that is all thanks to you.

Here is just a snapshot of what we were able to fund in 2020, because of your amazing support this year…

CARE FOR THE HEART

BABY LEO INCUBATOR

Premature CHD warriors stay on the neonatal intensive care unit until they have gained enough weight to have the best chance for a successful heart surgery.

This year we were able to fund a new, high-tech incubator for the NICU ward. Read more about the Baby Leo incubator

KARDIA MOBILE DEVICES

102 ECG devices allowing adults and children CHD to monitor their ECG by themselves at home using their mobile phone.

The results are then emailed to the hospital directly, eliminating disruption to school and work.

BABY MRI COIL

The coil for the MRI scanner enables babies to be more comfortable during their MRI scan.

The coil also has ‘cameras’ built into the front and back panels. This piece of equipment leads to improved image quality and diagnostic value during baby MRI scans. Watch MRI Coil video

INR HOME-TESTING KITS

Many heart warriors have to come to hospital for regular blood tests. This year you’ve helped us fund 42 INR blood testing kits to allow CHD patients to check their blood at home!

Read more about the difference these machines make here

CARE FOR THE MIND

SNACKS & DRINKS FOR NHS STAFF

Our amazing NHS have not only kept us safe through the  pandemic, but they have also continued to give exceptional care to our heart warriors.

#BecauseofYou we were able to offer NHS staff refreshments during long shifts in the hospital.

VIRTUAL WELLBEING SESSIONS

We have teamed up with Halsa Wellbeing to offer our heart families online wellbeing and relaxation sessions.

Sessions range from self-massage and Yoga to talking therapies and how to deal with stress. Interested? Email here

FISH TANK FOR WARD L51

A firm favourite with our heart warriors staying on Ward L51. Thanks to your donations we have been able to fund the running of the ward fish tank for another year.

Many children use the tank as a goal to walk towards while recovering from surgery.

TEEN SUPPORT BOOK

We are excited to announce our new support book for teen heart warriors. This book will be given to teens before heart surgery at the Leeds Congenital Heart Unit.

A big thank you to all the teen heart warriors who helped write this book. Watch this space for it’s release!

CARE FOR THE FAMILY

FAMILY SUPPORT GRANTS

During the COVID-19 pandemic, we knew that it was more important than ever to continue giving our support grants to families staying on the heart unit who need them.

We have given £12,850 in family grants in 2020 #becauseofyou

ECKERSLEY HOUSE

In 2020 we have given £45,000 to vital home-from-home Eckersley House.

Eckersley House looks after so many of our heart families by giving them somewhere to stay just minutes from hospital.

FAMILY SUPPORT WORKER

We are delighted to welcome Sarah Cherry to the CHSF team as Family Support Worker.

Sarah will support our heart families to access services, provide practical support to families whilst being treated and will set up, promote and deliver activities for our families. Read more here…

CARE FOR THE FUTURE

SONOGRAPHER TRAINING

Because of you we have been able to fund expert training for sonographers throughout our region.

This training was fully sponsored by CHSF in 2020, but will be facilitated by our charity partners at Tiny Tickers in early 2021. Watch this space for more details.

And that’s not all…

You can read more about the life-saving projects you have helped to fund this year in our Social Impact Report 2019/20.

It is packed full of patient stories, news from the hospital and how your donations are making a difference across the heart service and our region.

So grab yourself a cuppa and read all about what you have made happen this year…

Read now

You can help keep supporting hearts for life by making a donation to CHSF

DONATE NOW

Because of your fantastic fundraising, this year we have been able to appoint a dedicated support worker for our heart families. Everyone, meet Sarah Cherry!

Sarah will help our heart families to access services, provide practical support to families whilst being treated and will set up, promote and deliver lots of exciting activities for our families.

We’ll let Sarah tell you a bit about herself…

The Family Support Worker job role is a dream come true for me. Building a whole new service from scratch for such a worthwhile cause is extremely exciting!

Although during this current time it has had its setbacks, the dedication of the team here at Children’s Hear Surgery Fund has motivated me and given me the determination to adapt and overcome the barriers we are all facing due to COVID-19.

In the last two months I have met some truly amazing people, particularly the Children’s Cardiac Nurse Specialists and the Leeds Congenital Heart Unit ward staff who have so much passion for what they do. They have welcomed me onto their team and their wealth of knowledge and relationships with families have been a fantastic source of support to me already.

However the true motivation from this role comes from the families I have met so far. The strength I have witnessed from parents and patients is an inspiration and because of this I feel it is so important that this service is shaped by our families.

I would love to hear from heart families to learn about your experiences and listen to what support you would find useful during your time at the Leeds Congenital Heart Unit.

 As Family Support Worker for CHSF I can offer support whilst families are in hospital such as:

• Family support grants to ease the financial struggles when staying in hospital
• 1-1 online wellbeing sessions – from online activities for children such as music sessions or I can be a listening ear for parents
• I will be delivering welcome packs to families from mid-December which will include essential items for a stay in hospital
• I am available to discuss the CHSF parent accommodation
• I can also support with those parenting struggles such as routines, behaviour and sleep.

This list is by no means extensive I will support our heart families in any way I can!

I can also offer support to families of CHD outpatients whether this be:

• Parenting strategies
• Links with schools
• 1-1 and group wellbeing sessions
• Holiday camp places
• Online activities and events

…or I can simply offer some time to have a chat and give advice where I am able!

Please feel free to contact me by text, telephone or email to have a chat about support, ask any questions or just to say hello  !

07929509227  |  Sarah.cherry@chsf.org.uk

or add me on Facebook: facebook.com/sarah.chsf

Wishing you all a very merry and magical Christmas and a brighter 2021!!