Kids the rea­son for week

Central Leader - - NEWS - By LAU­REN PRI­EST­LEY

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.

Last week was @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.’’

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 2 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-yearold daugh­ter was a very dif­fer­ent baby from day one. Heart ba­bies are just amaz­ingly strong.’’

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

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’.’’

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.’’

lau­ren.pri­est­ley@ fair­fax­me­dia.co.nz

Photo: JA­SON OXENHAM

Still smil­ing: Ta­mara Haynes says Win­nie Rose is stronger be­cause of her heart de­fect.

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