“As I prepare to leave the operating theatre, I want to know that families will continue to get what they need – because of your support, because of this campaign, and as ever… because of you!”
— Ms Carin Van Doorn OBE
Watch now
To celebrate Carin van Doorn’s amazing career, we have put together this short film which features personal insights from Carin and inspirational input from staff, families and heart heroes.
A huge thank to you everyone involved!
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
Funds raised through the Because of Carin appeal will go towards:“CHSF complement the medical treatment. They offer free parent accommodation, practical, wellbeing and financial support – and they are a shoulder to lean on when families need it the most.”Find out more about CHSF’s Family Support service“Many of our youngest patients require open heart surgery within days of birth. Your donation will help fund critical medical equipment, hospital resources and the staffing to care for them. Filling the gap in resources that the NHS cannot supply.”Read all about some of the vital projects CHSF funded last year in our 2024 Impact Report“CHSF brings our heart families together through regular events and peer networks like their Facebook group for patients and families. This provides reassurance, connection and helps build long-lasting support systems.”Check out our Facebook Group for CHD patients and families“As a surgical trainer, I’ve led many missions to perform cardiac surgery on paediatric patients in low-resource countries. While CHSF only funds work within our region, the expertise developed at the Leeds Congenital Heart Unit is shared globally.”
Louie #BecauseOfCarin
“We will never be able to repay Carin van Doorn for taking that chance on our boy, for believing in him and for changing our lives forever. For believing in herself and having confidence in the process. For giving him the chance at life he deserves, the surgery he always deserved and fought so hard for. “A nurse said to me ‘I never really believed in God… but if there is one it’s Carin van Doorn’. The woman that saved our baby boy. Here’s to our little Louie’s road of recovery – to a long, happy and meaningful life because of Carin.”— Louie’s mum, Emily
£15 could pay for
A Katie Bear, medal and certificate given to every child after they have open heart surgery at Leeds. This is a treasured keepsake and a reminder of a child’s bravery.
£125 could pay for
A KardiaMobile devicewhich attaches to a smart phone and monitors heart rhythms in children at home, so they don’t have to miss school for hospital appointments.
£750 could pay for
15 nights in CHSF parent accommodationfor those who don’t live in Leeds, but their child needs surgery at the LCHU. These rooms keep families closer together.
£2,500 could pay for
Hosting Youth Events for one year providing essential peer support and connections with young people who have shared experiences of CHD care across our region.
“Thank you – for your kindness, your support and your belief in CHSF’s mission and the future of the Leeds Congenital Heart Unit. It has been an absolute honour to be a part of this world-class team.”
Ms Carin van Doorn OBE
Consultant Congenital Cardiac Surgeon
Trustee, Children’s Heart Surgery Fund
“Thank you – for your kindness, your support and your belief in CHSF’s mission and the future of the Leeds Congenital Heart Unit. It has been an absolute honour to be a part of this world-class team.”
— Ms Carin Van Doorn OBE, Consultant Congenital Cardiac Surgeon & Trustee, Children’s Heart Surgery Fund
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that.
Carin is retiring and she is having a party!
Carin will be letting her hair down at The Wardrobe, Leeds in the evening on Friday 28th November.
A band is booked and the invitation is open to anybody who knows her.
If you would like to contribute to her retirement gifts please do so below.
Her main present will be the party itself and we’ll use whatever is left over to buy gifts that we’ll present to Carin on the night!
You have been invited to a party for patients and families cared for by Ms Carin van Doorn OBE
Saturday 27th September
Please RSVP below…
You have been invited to a party for patients and families cared for by Ms Carin van Doorn OBE
Saturday 27th September
Please RSVP below…
CHRISTMAS PARTY 2024
The famous CHSF Christmas Party for our amazing heart heroes and their families is BACK for 2024!
This annual celebration is a brilliant opportunity for CHD patients in our region to have fun and meet other children and families living with congenital heart disease.
WHEN?
Sunday 8th December 2024
11am – 3pm
WHERE?
Cedar Court Hotel Bradford
Mayo Avenue, Rooley Lane, BD5 8HW
WHO?
Heart warriors and their families who have been treated at the Leeds Congenital Heart Unit in the last 3 years will be given priority.
(We understand the popularity of this event and will be operating a waiting list as we’d love to have as many heart families join us as possible.)
WHAT’S ON?
Santa’s Grotto . Entertainment from BoomChikkaBoom . Anna and Elsa visit us from Arendelle . Teen area . Stalls . Games . Food . and more…
Caring for the family of heart heroes is hugely important to CHSF, which is why the charity invests significant time, resource and funds into the Christmas Party every year.
The feedback we get is that CHD patients, parents and siblings all benefit a great deal from coming together to celebrate the upcoming festive period at our annual party, knowing that people with shared experiences are in the room.
We know that great friendships and bonds are formed when heart families like you get together, and it’s a chance to let your hair down in a supportive environment. So please come along – we’re looking forward to seeing you there!
SIGN UP TO THE WAITING LIST
We are now at full capacity for the Christmas Party 2024. If you would like to be added to the waiting list for this event, please fill in the form below…
REGISTER YOUR INTEREST
Fill in this form to let us know you would be interested in attending this year’s Christmas Party.
Due to popular demand, you will receive an email to let you know your interest has been registered and a member of the CHSF team will be back in touch as soon as possible to confirm whether you and your family have been allocated a place at this year’s party.
APPLICATIONS TO ATTEND THIS YEAR’S CHRISTMAS PARTY HAVE NOW CLOSED. WE’LL BE IN TOUCH WITH ALL WHO HAVE APPLIED VERY SOON.
DONATE
Make a donation to Children’s Heart Surgery Fund and help us to keep being there for the thousands of babies, children and adults living with heart disease in our region.
It’s only with your help that we can keep supporting hearts for life.
SWEEPSTAKE GUIDELINES
Sweepstake competitions can be a fun way to help raise money for Children’s Heart Surgery Fund, but there are some basic rules that you will need to follow if you are planning on running your own sweepstake:
• The entry price must be the same for all participants.
• You need to decide before hosting your competition if the entry money will be split between the winner and the Charity, or if you are going to have a separate prize with all entry fees going to the Charity. Whichever approach you take, participants must be informed before they enter, and the host cannot make a profit (i.e funds will need to be donated).
• Participants in an office sweepstake must all be employed to work from the same location.
• You must not sell entry on the street, or house to house.
• If you are doing a competition where people need to guess the square of a picture that an object is hidden on such as our ‘Find Katie’s Kite’ game, or guess the name of a character such as our ‘What’s my name?’ game, you will need to decide ahead of time which the winning square is, and make sure that is saved somewhere securely (for example in a sealed envelope).
For more information on the rules of running your own fundraising sweepstake please visit the Gambling Commission website, www.gamblingcommission.gov.uk, or contact our Fundraising team at info@chsf.org.uk or on 0113 831 4810.
Paying in your fundraising money
Have you held a sweepstake fundraiser for CHSF? You can pay in your fundraising money from your sweepstake in many different ways.
For more information, visit our ‘Paying In’ page.
As part of Mental Health Awareness Week we are sharing these fab resources from the Yorkshire & Humber Congenital Heart Disease Network. The theme for 2024 is ‘Moving more for our mental health’. Not only is movement super-important for cardiac health, but is brilliant for our mind too.
Does your child have a congenital heart condition? Here are some activities for 0-12 month old infants to encourage the development of gross motor skills…
Babies and Children with congenital heart conditions need to be involved in play as much as possible. Regular position changes will help them develop their motor skills.
Babies with congenital heart conditions may develop at different speeds but we would anticipate that they still follow the normal milestones. They need opportunity to explore their environment.
If your child has had a sternotomy (surgery involving an incision down the middle of the chest) then it may be necessary to avoid tummy time for six weeks following surgery and scoop them to pick them up. However after six weeks tummy time should be encouraged.
If your baby has had a thoracotomy (surgery involving an incision round the side of the chest) or has not had surgery at all they can start tummy time from new born.
Most babies and children will not require any extra help or advice to enable them to develop, occasionally if they are not progressing as well as anticipated they maybe referred for physiotherapy.
If you are worried about their development please discuss with your Cardiologist, Paediatrician, Specialist Nurse or Physiotherapist.
The Children’s Physiotherapy team at Leeds Children’s Hospital can offer advice on 0113 392 0609
Jump to…
0-3 months 3-6 months 6-9 months 9-12 months
0-3 months developmental activities
Please ensure that your back is well supported when carrying out all activities.
Child on their back
Encourage:
- Head in line with the body
- Arms forward and down, hands together
- Hips bent and legs relaxed
Helps to:
- Develop eye contact with you
- Enable hands to reach and touch legs
- Develops stomach muscles
- Reduces arching
Play ideas:
- Small lightweight toys in midline to explore
- Watching toys move side to side
- Eye contact and interaction, singing songs together
Child on your tummy
Encourage:
- Arms forward
- Head in midline
- Weight bearing on forearms
- Little and often
Helps to
- Develop eye contact with you
- Develop back muscles
- Develop head control
- Strengthen arms and shoulders
Play ideas:
- Eye contact with you
- Interacting and singing with baby
- ‘Cooing’ at baby
Child in side lying
Encourage:
- Shoulders forward and hands together
- Bend top leg to help balance
- Place bottom leg straighter
Helps to:
- Bring arms and legs together
- Develop play skills in midline
- Develop the beginnings of rolling.
- Develop the rib cage muscles and enhances breathing capacity
Play ideas:
- Toys in both hands
- Small lightweight rattles
- Mirror
3-6 months developmental activities
Please ensure that your back is well supported when carrying out all activities.
Child supported between your legs
Encourage:
- Child supported between your legs or lying on the floor
- Encourage child to reach for feet
- You may have to help them with this
Helps to:
- Promote awareness of the hands and feet
- Develop head control
- Aid awareness of feet and of midline
- Small lightweight toys placed on feet (foot rattles)
- Tickle feet
- Sensory toys and different textures on feet
Encourage:
- Head up in line with the body
- Arms out from under the body and in front of the towel
- Elbows under or slightly in front of the shoulders
- Develop head control
- Develop muscles in the arms and shoulders
- Develops muscles of the back
Encourage:
- Head upright in line with body
- Body upright and straight
- Hips at 90 degrees and legs forward
- Arms forward and down
- Develop balance
- Develop muscles of the body, back and hips
- Free the arms for play
- Develop independence in sitting
- Sit in front of child and encourage play with toys
- Knocking over stacking blocks
- Singing songs
Encourage:
- Head in line with body
- Body straight, then rolling to follow the movement of the hips
- Arms down, out from under the body
- Top hip bent when rolling, both hips flat when on tummy
- Develop muscles of the tummy and back
- Develop body coordination for rolling
- Allow the child to experience shifting of body weight
- Place a musical toy or brightly coloured toy next to the child’s shoulder but just out of reach to entice them
- Sing a song and complete roll in time to the music
6-9 months developmental activities
Please ensure that your back is well supported when carrying out all activities. Child supported in sitting
Encourage:
- Child to reach for toys in front of them and then side to side
- Develop hand eye coordination
- Develop balance
- Develop advanced sitting skills
- Expose child to shift of body weight and how to maintain balance
- Row row row your boat rhyme
- Rolling a ball between child and parent/carer
- Place a toy just out of reach.
Encourage:
- Head and body upright when side sitting
- Body over leg when on hands and knees
- Develop muscles of the body, hip, shoulders and arms
- Develop coordination
- Allow child to experience shifting of weight
- Pre-cursor to crawling
Encourage:
- Head in line with body
- Shoulders even, arms straight elbows under shoulders
- Hands under elbows, hands open
- Knees under hips
- Develop muscles in the upper and lower limbs
- Develop balance
- Develop muscles for crawling
- Gently use your hands to rock child backwards and forwards
- Sing a song
- Help the child push a ball or reach for a toy
Encourage:
- Child starting to control own body and needing less support
- Reaching further for toys and up in the air
- Do little and often.
- Develop balance
- Increase weight bearing through upper limb
- Encourage transition from sitting to crawling.
- Place toy out of reach in front and to one side to encourage child into side sit
Encourage:
- Child to come up into a sitting position
- Weight bearing on arm
- Trunk rotation
- Place child lying on stomach. One of your hands should be on the opposite hip, place your other hand under arm next to you
- Gently pull up back and then down on hip, assist as needed under the shoulder by pulling forward and up
- This activity should be done slowly and steadily to encourage child to help in coming to a sitting position
9-12 months developmental activities
Please ensure that your back is well supported when carrying out all activities. Child crawling across your lap
Encourage:
- Head in line with body
- Arms straight and elbows and hands underneath shoulders, hands flat on the floor
- Knees under hips
- Develop balance
- Develop muscles of back
- Develops muscles in upper limbs
- Place a puppet on your hand or a favourite toy on the other side of your leg to encourage child to crawl over your leg
Encourage:
- Head upright in line with chin, body upright and straight
- Feet flat on the floor facing forward
- Arms on forward on the stool to play or lean on
- Develop muscles of the body
- Develop balance and control of body
- Increase weight bearing through lower limbs
- Child can pretend to be a drummer with rattles or wooden spoon on the stool
- Push cars along the top of the stool
- Place a book on the stool for child to look at.
Encourage:
- Head and body upright and straight
- Knees start off bent then one becomes flexed as the child come up into half kneeling then support given to come up into standing.
- Develop muscles of the legs, hips and body
- Develop ability to shift body weight forward and up over the feet
- Develop coordination of the legs
- Develop balance
Encourage:
- Child to pull up to the walker
- Walk on carpet rather than laminate to begin with
- Walk in straight lines free from obstacles
- Develop balance
- Develop muscles for walking
- Increase confidence to take independent steps
- Walkers
- Trolley with blocks
- Push a baby or a teddy
Encourage:
- Turning head to look for and reach toy behind them
- Reaching between two pieces of furniture
- Gradually increase the distance between furniture to encourage stepping.
- Refine development of balance control of the body and legs
- Develop coordination
- Gain confidence in standing in preparation for walking
- Place toys or snack on a table or stool behind the child to encourage them to turn round and reach.
- Place blocks on one surface and encourage child to move them from one surface to another.
Information published by Specialist Childrens Physiotherapists, Leeds Children’s Hospital and the Yorkshire & Humber Congenital Heart Disease Network.
Download the full PDF booklet here
© The Leeds Teaching Hospitals NHS Trust • 2nd edition (Ver 1) Developed by: Sarah Hibbert, Clinical Service Manager and Gemma King, Senior Paediatric Physiotherapist. Publication date 04/2024, Review date 04/2027
This International Women’s Day, we took the opportunity to interview our fantastic Consultant Congenital Cardiac Surgeon Miss Carin van Doorn.
Carin is the Head of Congenital Cardiac Surgery in Leeds, and has led from the front to optimise critical care in cardiac patients all around the world. Here’s what she had to say…
The theme of International Women’s Day 2024 is ‘Inspire Inclusion’. How does that resonate with you as a leading female congenital cardiac surgeon in Leeds?
“Females should be given the opportunities to take on the roles that they aspire to – the same holds true for other groups of people currently unrepresented in various roles.
“Be prepared to work hard, as it is a competitive world out there, but to achieve your ambitions it is also important to have role models and mentors (female and male!).
“As I have become more senior in the job I have also become increasingly aware of my responsibility to inspire and support the next generation and am active in various mentoring roles.”
Could you provide us with a brief overview or timeline of your work in congenital cardiac care in Leeds, and around the world with Chain of Hope?
“I was a cardiac surgical trainee in Leeds and after congenital subspecialty training in Birmingham and Great Ormond Street Hospital (GOSH) was appointed as a consultant in Leeds in 1999.
“I left after 3 years to go to GOSH, and later also worked in Denmark. In 2013, I returned to Leeds to head up a new team of surgeons and have been here ever since.
“My first humanitarian cardiac mission with the charity Chain of Hope was to Mozambique in 2004, followed by annual missions to many other African countries since. Activity stepped up in 2009 when prof Magdi Yacoub opened the Aswan Heart Centre in Egypt and I joined him as a surgeon and trainer undertaking monthly visits to Aswan until COVID stopped travel.
“Since then, the Centre has been running independently by the local team and I am incredibly proud of their achievements with many of my previous trainees now being trainers themselves.
“In July I’ll be leading my first mission for Chain of Hope since COVID, and will be accompanied by many Leeds doctors and nurses on the team.”
Can you name some highlights of your time working at the Leeds Congenital Heart Unit?
“I am privileged to work across a large age spectrum, operating on a newborn baby one day and an adult patient the next. We have a close-knit cardiology-cardiac surgery team that can be relied on to pull out all the stops if the going gets tough, but there are also times where we do not take ourselves too seriously.
“The opening of the Hybrid Theatre in 2019 was a real highlight, as this has truly transformed the way we work. Although at present it is pretty heavy going in the NHS due to the capacity issues, I like the transformation that is taking place at the Leeds Teaching Hospitals Trust, driving forwards the research and innovation agenda.
“I am the Unit lead for a clinical trial on heart muscle preservation during cardiac operations, and very excited about the development of our virtual 3D heart models for teaching and training.“
What do you do to relax outside the Leeds Congenital Heart and away from the hospital?
“I like being active in the outdoors, whatever the season. We are lucky that the beautiful Yorkshire Dales are just on our doorstep for some great walks.
“I have also always enjoyed watersports and a few years ago discovered sea kayaking and a lot of UK coastline is waiting to be explored!
“I also like cooking and baking and enjoy reading a good book.”
A huge thank you to Carin for her inspiring words, and for giving us an overview of her amazing career to date.
Your donations have supported Carin and her team’s vital work in our region for over 35 years, maintaining the Leeds Congenital Heart Unit’s status as a world class centre of excellence.
To help support the Heart Unit, it’s patients and their families into the future, you can set up a regular gift to CHSF here.
About Ben Nevis Sunrise challenge
Multiple dates: June – September 2024 (available dates)
Registration fee: £10
Fundraising pledge: £150
If you’re up for a challenge then walking to the top of Britain’s highest mountain, Ben Nevis (Beinn Nibheis), is a pretty good one to undertake. Ben Nevis, standing at 1345m (4,413ft)), is on the west coast of Scotland, right in the heart of the Highlands. The views from the summit of ‘Big Ben’ are spectacular, from the hundreds of other summits visible from the top, right over to the Atlantic and the western isles.
Distance: Approx. 11 miles (17.7km)
Duration: Most groups complete this walk in 8-10 hours.
Difficulty: Active Plus
Age: 16+ (under 18s must be accompanied by their parent/guardian throughout)
This is an open event (not just CHSF supporters) so you’ll walk with friendly fellow challengers – some will be fundraising, others just completing the challenge to push themselves, get fit, or tick something of a bucket list. You will walk alongside an experienced guide from Large Outdoors.
For more information about the challenge, please visit Large Outdoors website for details and FAQs.
Please note there is a compulsory kit list for this event. Please check this list at www.largeoutdoors.com/kit-list/day-walk-kit-list. You will need to ensure you provide all the equipment listed to take part on the day.
How to take part
Places are offered in partnership with Large Outdoors, follow the below to secure your place today.