Heart Children Ireland
Congratulations to Heart Children Ireland on their selection as our charity partner for 2022!
Heart Children Ireland is the national organisation that supports children born with Congenital Heart Disease (CHD) and their families. CHD is term that covers a range of defects present in the structure of a baby’s heart at birth. This defects affect the way the organ works and how blood is pumped around the body. CHDs can vary from mild to severe and no two children have the same diagnosis.
Our mission is to help these children live the best life possible in hospital, at home and in school and to support the whole family unit while they are on the same journey. See www.heartchildren.ie.
Background
Congenital Heart Disease is the most common birth defect and every year, 5-600 babies are born in Ireland with the condition. The diagnosis is hugely stressful for parents, both psychologically, financially and practically. Some children make a full recovery after an initial surgery. Others face a lifetime of hospital visits and repeated surgeries which are required to sustain their lives.
CoaguChek Programme
Heart Children Ireland’s CoaguChek Programme funds self-test devices to children which allow them check their warfarin levels from home through finger-prick blood testing without needing to make regular visits to hospital.
The children/families we support live in all corners of the country, many located far from general hospitals. The taking of bloods, using needles, finding blood veins, etc can be very time consuming and traumatic and the simplicity of doing it safely from home (especially in Covid times), by a parent, using finger-prick testing, is less emotionally draining and more effective for the child and the whole family unit.
The cost of supplying a CoaguChek machine to a child/family is approx. €500. Requests for the devices are made by the Clinical Nurse Specialists in the Children’s Heart Centre, CHI Crumlin. They assess each family’s need, financial resources and suitability to receive funding. In 2021, requests for the devices increased by 375%, largely driven by Covid, and this trend is likely to continue.
The success of the programme will be in the number of devices that we are able to fund to children living with Congenital Heart Disease, over the next five years. Some children will remain on Warfarin medication for life and will need a device permanently. Others, will be on the medication short-term and when they are finished, their CoaguChek device is returned to Crumlin and recycled to benefit another patient.
Funding from the Galway Cycle would provide surety that we can continue to support children and families and their continuing care post discharge from hospital following major surgery for several years to come. The provision of the CoaguChek device reduces infection risk for children with lower immunity who will no longer need to regularly access a hospital setting; reduce trauma for children facing regular blood test and generally reduced the stress in the life of a family caring for a child with a long-term illness.