Babies
Heart Kids About 50% of new-borns with Down syndrome have congenital heart disease. Often, this means surgery while still a baby, but the prognosis in New Zealand is excellent, and the overall risks of this surgery are no different from the general population according to research released last year in the Journal of Congenital Cardiology. We spoke with Ashley Mills, the Hospital Family Support Co-ordinator for Heart Kids NZ, a fantastic charity that supports whānau throughout the country who have children with congenital and acquired childhood heart conditions, to find out more about their work and heart conditions. Their website is www.heartkids.org.nz Many NZDSA members know first-hand the amazing work that Heart Kids NZ undertakes every day to ease a challenging journey.
Where can babies receive heart surgery in New Zealand? Starship Hospital is the only place in Aotearoa that does cardiac surgery on babies. What professionals are usually involved in a paediatric heart surgery? Paediatric cardiologists, surgeons, nurses, anaesthetists, radiologists and possibly some others depending on the circumstances. Is there more than one kind of heart surgery? Yes, there are lots of different types. There is open-heart surgery, where the chest is opened and the patient goes onto bypass, and there are other types of heart surgery and cardiac procedures that don’t require open-heart that can be done by cardiac catheterisation.
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Your baby having surgery is of course a scary and stressful time for whānau – how do Heart Kids work with families around this time? We connect with families in the community and/or the hospital, we are there to listen,
to inform, to support, to walk alongside them whatever their needs are at the time. This may mean a home visit before the surgery to help families prepare - with information, practical, emotional, and at times financial support. Or it could be a phone call, or it may mean visits from a hospital Family Support Taituarā (FST) on the wards in Starship who will connect, provide emotional and practical support, provide information, and be a friendly face who can listen and spend time if needed. We take into consideration the whole family as well, siblings for example. We can assist to refer to other agencies or support if this is required. What can a family expect in the weeks following a surgery? It really differs from family to family. Some are in hospital for many weeks or months before they can go home or transfer to a hospital closer to home, others will make a quick recovery and be home within days or weeks. Emotionally, we continue to support them during this time, and when they are home in the community Heart Kids NZ FSTs engage and offer support and connection in the local community.