Tot's heart disease has hit family hard

The first few months of Indianna Tatana's life turned her family upside down.

The left side of her heart failed to develop and the 11-month-old has already had two major bypass surgeries and spent three months at Starship Children's Hospital in Auckland.

Her mother Carmen Tatana tells her story as a contribution to this week's fundraising effort for @Heart, the organisation that supports New Zealand children and families affected by congenital heart disease.

@Heart receives no Government funding and Mrs Tatana said it had been wonderful to her.

The mother of two healthy boys, her story began when she had the first scan during her pregnancy with Indianna.

No heart could be found, so she was asked to come back for another. The result was the same.

She was eventually told there was a problem with her baby's heart. It was devastating news.

Because of it the birth had to happen in Auckland. Afterward she was able to hold her baby for a minute before Indianna was whipped off for hospital care. She had her first surgery, of about eight hours, on the fourth day of her life.

The most difficult time was between that surgery and the next one, which happened three months later.

Mrs Tatana had to express milk and Indianna was fed through a tube. There were multiple medications and a long time in hospital.

Indianna's father, Tony Tatana, had to give up his job. Her big brothers had to be cared for by grandparents while the parents were in Auckland.

After the second surgery mother and baby could go home. By that time Mrs Tatana was trained in delivering medication, weighing her baby daily and testing to make sure she was getting enough oxygen in her blood - things most people never have to think about.

Medical staff visited the house twice a week, to keep things on track.

There's no cure for congenital heart defects. Indianna will need another operation at age three or four, and she may need a heart transplant later in life.

She won't be able to go to preschool or to children's birthday parties, because usual childhood illnesses will be much more serious for her. School should be okay though, because she will have had another operation by then.

She's now sitting up, weighs 12kg and seems to be a happy little girl. Her big brothers love her and are good with her. Her dad has been able to go back to work.

"We are just a normal family now, pretty much," Mrs Tatana said. "It was totally different to having a normal baby, but now it's all worth it."For information, or to donate, go to: shakethebucket.everydayhero.com/nz/Indianna

Congenital heart defects

• 
  12 New Zealand babies a week born with them
• 
  35 different types
• 
  no cure for any of them
• 
  take more lives than all other childhood illnesses combined
• 
  many babies live less than a year