Emily Slater was a day old when she had open-heart surgery.
Emily, now a strong sassy three-year-old, is one of the 12 babies born every week in New Zealand with a heart condition. A congenital heart defect (CHD) is the most common birth defect in New Zealand, affecting 1 in every 100 births. There is no prevention nor cure for a CHD. It is also the #1 cause of death in babies and newborns.
Emily’s mum Chanel says Heart Kids NZ helped her and her husband Rhys at the time when they needed it most and she will be forever grateful.
“It’s the most horrible, most mentally and emotionally straining thing to go through ever. Nothing can prepare you for it.
“I don’t know what I would have done without Heart Kids NZ to support my husband and me. If we didn’t have Heart Kids NZ it would have been an extremely hard process.”
Scans picked up something was wrong with Emily late in Chanel’s pregnancy and she reached out to Heart Kids NZ for support before her daughter’s birth.
While doctors initially thought Emily’s condition was very serious, tests after Emily’s birth fortunately revealed her condition – while still serious – was not as bad as predicted.
Emily was born with a coarctation of the heart or narrowing of the aorta. She also had a small hole in her heart.
Soon after Emily was born, she was rushed to the Paediatric Intensive Care Unit at Auckland’s Starship Hospital and had open-heart surgery the next day.
Emily’s operation went well, but her recovery was difficult. She was in hospital for seven weeks, and feed by a tube for six months.
Chanel says all through the worst time of her life Heart Kids NZ quietly came in and supported her family. It was “massive” having someone who understood your journey.
“When you are talking to someone that you feel understands what you are going through it helps you heal.”
Most importantly, Heart Kids NZ gave her hope.
“Heart Kids NZ would remind me that even with what I was going through, there was hope for a bright future for Emily.”
In hospital Heart Kids NZ helped out with meals, they also provided a listening and supportive ear, and encouraged and enabled her to get out of her daughter’s room and take a break.
At home in Kumeu, the charity has checked in with phone calls and asked if she needed someone to come and see her at home.
Even though Emily is now three, Heart Kids NZ is still reaching out, and Chanel hopes Emily can attend a Heart Kids NZ camp and meet others who understand her when she is older.
Heart Kids NZ is running its annual street appeal on Friday, September 29, and Saturday, September 30 at Bunnings stores nationally. Look out for the heart heroes and make a donation.
Chief executive Dr Ruth Gorinski says families, such as the Slaters, turn to Heart Kids NZ at some of the most vulnerable and stressful times in their lives.
“The diagnosis of a childhood condition can be devastating for families who can be faced with separation, isolation, stress, financial hardship and loneliness.
“Often these precious children have more than one heart problem and need multiple surgeries.
Heart Kids NZ is there for every step of their heart journey from diagnosis to teenage years and into adulthood.
“As an organisation we receive no government funding and rely on the generosity of New Zealanders to provide our vital support.”
Every year in Aotearoa, more than 600 major heart surgeries and procedures are performed on children or babies, sometimes in their first few hours of life.
Heart Kids NZ has more than 10,000 members and is growing at 15% each year.
Heart Kids NZ has a team of dedicated family support taituarā across the country that support heart children, youth, adults and their whānau at Starship Hospital, Auckland City Hospital, local hospitals and at home.