Whanganui mum praises Heart Kids charity for support after baby's surgery

Lillie-Mae and Dennis Martini-Richards with daughter Mai-Ella say Heart Kids has provided incredible support. Photo / Bevan Conley

Whanganui mother Lillie-Mae Martini-Richards felt certain her baby daughter was unwell, even though the infant appeared to be thriving.

"I just had a really strong instinct that she wasn't 100 per cent healthy.

"She was 4 months old when I took her to an appointment at Whanganui Hospital and she was seen by a visiting paediatrician from Auckland who diagnosed a congenital heart defect [CHD]."

Baby Mai-Ella was rushed to Auckland for an urgent operation at Starship Children's Hospital.

"She needed open heart surgery and only had a 50/50 chance of surviving the operation," Martini-Richards said.

"The staff at Starship were amazing but it was the wonderful people from Heart Kids who gave me the emotional and moral support I really needed at such a difficult time."

Heart Kids is a not-for-profit organisation with a mission to provide lifelong support to all affected by a childhood heart condition or heart disease acquired through childhood.

"I had never heard of them before but their fantastic volunteers were there with me at Starship.

"They were there to listen or to just be with me if I didn't feel like talking and they would make sure that I was feeding myself."

June is Heart Kids Awareness Month and the organisation's fundraising and communications manager Nicola Garland said they do not receive funding from government and rely on public donations for their work.

"Normally we'd be out on street corners shaking our collection buckets," Garland said.

"But that obviously couldn't happen this year. We've had to cancel our street appeal and other fundraising events due to Covid-19.

"Instead our volunteers, supporters, heart families and friends are shaking their virtual buckets and collecting donations at shakeabucket.org.nz."

Every year, more than 600 major heart surgeries are performed on children or babies, sometimes in their first few hours of life.

"For many, this won't be their last operation and they will continue to face the day-to-day challenges associated with their heart condition for the rest of their lives – and that's what we are here for."

Baby Mai-Ella is now 14 months old and the lifesaving surgery, along with medication, has improved her quality of life but Heart Kids still provides ongoing support for the family.

"The bills don't stop when you have a sick child," Martini-Richards said.

"Her dad had over a month off work during Mai-Ella's recovery at Starship and Heart Kids helped us out with those, with home-cooked meals and other things we needed.

"They are amazing people and they understand because they are parents or grandparents of a child with a heart condition or heart disease so they have so much empathy."

And the support from Heart Kids has continued with phone calls and support at Mai-Ella's medical appointments.

"They walk beside you until your children are grown," Martini-Richards said.

"I am so glad they are there."