This week we were visited by Eve Haynes, a community and events fundraiser for the charity Children’s Heart Surgery fund [CHSF].

Eve told us that congenital heart disease is the most common birth defect and cause of infant mortality across the world.​ In the UK, each year it affects almost 1 in 125 of new-born babies. Fortunately not all birth defects require surgical intervention, but monitoring is vitally important. Some conditions require multiple surgical operations over time.

CHSF was started in the 1960s by a surgeon at Killingbeck Hospital to provide assistance to the unit set up to support children born with heart disease. The unit has since transferred to Leeds General Infirmary where it is now a world class centre of excellence. A comprehensive examination in 2020 analysed children’s heart surgery survival across all of the units in the UK, and found that by a significant margin, the best outcomes were achieved by the Congenital Heart Unit at Leeds Children’s Hospital: an amazing 94.7 % survival rate.

The Unit provides services for all patients and their families with congenital heart disease from birth to adulthood who live in Yorkshire, Humber and North Trent. Treatment is both medical and surgical or both, and includes the screening of large numbers of children to make sure they do not have cardiac problems. The service extends from pre-natal diagnosis to the treatment of congenital heart disease in adults. Outpatient clinics are also provided at local hospitals throughout the region.

The Children’s Heart Surgery Fund became a registered charity in 1988 to support the Unit, by providing funding and resources. The public will be familiar with the charity’s mascot, the iconic Katie Bear, said to have been originally drawn by a young patient called Katie. Every child who has open heart surgery at the Leeds Congenital Heart Unit receives a Katie Bear teddy, certificate and medal. For many children, Katie helps them to be brave when facing treatment and thereafter becomes a treasured keepsake.

CHSF provides life-saving medical equipment for the Leeds Congenital Heart Unit, and vital ward resources. They also fund staff training, scientific research and new clinical roles. Their board of trustees meets regularly to review major requests for funding, and the board includes pioneering medical experts from the Heart Unit.

Among services provided by the charity is the provision of onsite accommodation so that parents can be close while their child is in hospital; help with living expenses; illustrative books to help the child and siblings understand what they are going through, equipment such as home blood testing kits so children miss less school for hospital appointments; welcome packs with essentials for families who may have been ‘blue lighted’ to hospital with nothing with them, ​eg phone chargers, reading glasses for all the forms they are then presented with, and importantly, a dedicated Family Support Worker,​ offering practical and emotional​ assistance to the whole family affected by the illness.

Eve was able to show us videos of families which showed the remarkable resilience of the children and also appreciation for the services provided by CHSF.

All this costs money – Eve estimated that annual running costs including staffing comes to £300.000. All the charity’s income comes from public donations, and they need to raise almost £1 million per year.

It’s a worthy cause – because of these donations CHSF are able to help over 17,000 babies, children and adults living with congenital heart disease each year.

In giving a vote of thanks, Rotarian Caroline Noh recalled her experience of fundraising last year at Tesco’s, assisted by Katie Bear and a card reading device that stubbornly refused to work. Fortunately there is a cash point at Tesco and the public were generous.

Long may that generosity continue: Eve’s charity is doing a great job, and we were grateful to her for a very comprehensive presentation.

Get in touch with Roundhay Rotary Club:

0113 266 6203