Every week, 12 babies are born with or acquire a congenital heart condition in Aotearoa – affecting about 600 whānau a year. Other children will also be diagnosed with a heart condition due to childhood illness, such as Rheumatic Fever or Kawasaki Disease.
Heart Kids NZ is a not-for-profit organisation that services children, teens, young adults and whānau living with a childhood heart condition. It is the only national organisation in Aotearoa dedicated to supporting heart kids throughout life.
Established in August 2001, Heart Kids Bay of Plenty currently supports more than 160 heart families from Katikati to Paengaroa. With more babies being born in the Bay of Plenty, and an increase in the Bay’s population there are more babies with heart conditions living in the area and now, more whānau needing support.
Diagnosing a childhood heart condition can be devastating for whānau as it is often the first step in a long journey, often filled with long periods of separation from family members, isolation, high stress, financial hardship and loneliness.
Heart Kids NZ walk beside heart families to provide practical, financial and emotional support so parents and the wider whānau do not have to go through this journey alone.
Heart Kids NZ Communications Advisor Laurel Ketel says talking to people who understand what you are going through is a huge emotional support for parents, heart children, and adults.
“We have a dedicated Family Support Taituarā in the Bay of Plenty that supports heart children, youth, adults and their whānau. They organise family days, coffee groups and information evenings so heart families can get together, talk and connect.”
“This provides the chance to speak to others going through the same thing, share ideas, and just have some fun during what is often a fraught time in their lives..”
The part-time Family Support Taituarā in Bay of Plenty works with about 300 members to support families and provide care tailored to each family. They provide emotional, practical and financial support and go above and beyond to ensure whānau are looked after on their heart journey.
Usually, Heart Kids NZ Bay of Plenty supports about six babies under 12 months old, whereas the Heart Kids NZ Bay of Plenty branch currently supports 10 to 12 babies with childhood heart conditions.
“Our Family Support Taituarā offers genuine on-the-ground support and will text, call and visit to ensure families are okay and help with the support they need. If support is needed, our staff check in with families at all hours.”
There are always more services that Heart Kids NZ could provide. However, without government funding, Heart Kids NZ relies on donations and grants to survive. TECT recently funded $5,000 to Heart Kids Bay of Plenty to assist with operational costs.
Kate Barry-Piceno, TECT Trustee says that the purpose of the community trust is to benefit the people and community of the Tauranga and Western Bay district. By funding Heart Kids Bay of Plenty, TECT supports community wellbeing, resiliency and safety while promoting social inclusion and belonging for whānau going through a life-changing diagnosis.
“Whānau will often have extended periods off work caring for their child and as a result, face extra costs visiting Auckland’s Starship Hospital when separated. This funding will give these whānau the support they need when returning home,” says Kate.