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A heart for kids

LAUREN PRIESTLEY
Last updated 05:00 24/07/2013
Tamara and Winnie Rose Haynes
STILL SMILING: Tamara Haynes says Winnie Rose is stronger because of her heart defect.

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Tamara Haynes was devastated to learn her newborn baby girl had a hole in her heart.

But the 35-year-old says she found her footing again thanks to @Heart - an organisation providing support for families of children with heart defects.

Next week is @Heart Awareness Week and Mrs Haynes and her husband Mike are telling their story to support the charity.

Winnie Rose Haynes was born eight weeks premature on December 2, 2011 and weighed 1.8kg (3.9 pounds).

The family expected to have her home that Christmas but a routine checkup revealed an abnormality.

Doctors confirmed Winnie Rose had a congenital heart defect called tetralogy of fallot which would require up to four surgeries to save her life.

"You feel like your world's falling apart and you don't know when it's going to stop," her mother says.

"It was devastating.

"I started thinking I was going to be one of those people who lose a child," she says.

The first surgery needed to be performed immediately but Winnie Rose was too tiny to be operated on.

The family and doctors decided to insert a stent to keep her artery open when she was two months old instead of performing open heart surgery.

The move gave the wee girl a little longer to develop.

Winnie Rose had grown to more than 3kg (6.6 pounds) by then.

A stent is usually used on newborns and doctors said it was the first time they had used one on a baby of her size.

After the procedure the family was transferred to the paediatric cardiac ward at Starship children's hospital where the @Heart support workers volunteer.

Mrs Haynes says the help was appreciated. "They make you feel that it's something common and explainable instead of your child being broken or not formed properly."

The Remuera residents finally took their baby home on February 2 last year but in April her oxygen levels plummeted and she was rushed to hospital once more.

She had open heart surgery at 4 months old.

Her heart was just the size of a walnut.

Mrs Haynes says her daughter is a fighter.

"She's always been very gentle, loving and sweet-natured.

"I'm not just saying that because she's ours - our 5-year-old daughter was a very different baby from day one.

"Heart babies are just amazingly strong," Mrs Haynes says.

The @Heart organisation works to provide support, fund equipment, connect heart families, host activities and educate the wider community about congenital heart defects.

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Chief executive Lorraine Warshaw says it is ultimately the children and their families who keep the organisation going.

"They're such battlers. That's why we say ‘scars are for fighters'," Ms Warshaw says.

Congenital heart conditions are the most frequent birth defects in New Zealand with one in 100 children affected, Ms Warshaw says.

Education around congenital heart defects is the reason for @Heart's awareness week. Part of the challenge is when people confuse the charity with the Heart Foundation, she says.

"We need people to understand the need and the urgency of it. It's essentially about taking away some of the stresses of life, which a parent with a sick child does not even think about."

Families much stronger @Heart

Twelve babies are born in New Zealand with a heart defect every week.

The @Heart organisation was founded in 1984 by two mothers who lost their own children to heart defects. It now provides support and a wide range of services to families with "heart children".

It is the only charity in New Zealand that focuses on childhood heart defects. The organisation is not affiliated to the Heart Foundation and is run solely on donations.

■ Go to givingatheart.org.nz or text "heart" to 2427 to donate now.

■ Set up a fundraising page for @Heart at shakeabucket.org.nz from July 29.

■ Go to heartnz.org.nz for information.

- East And Bays Courier

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