One-in-a-million baby girl loses her battle to live video

CAMERON BURNELL/Dominion Post

Tessa Prebble's 10 month old daughter Eva Prebble Higham last month after being born with CHARGE Syndrome.

To her mother, she was one in a million, an unlikely joyous child with a rare condition, who died before her time.

Eva Prebble Higham, of Lower Hutt, died last week aged just 10 months, having spent her short life battling a rare genetic disorder known as Charge syndrome.

It affects about one in 10,000 newborns and its symptoms can range from minor deformities and sensory impairments to brain damage with nearly complete loss of the senses.

"She was a very happy happy kid. She had things happening to her all the time that were pretty unpleasant but most of ...

"She was a very happy happy kid. She had things happening to her all the time that were pretty unpleasant but most of the time she was smiling."

Eva was born profoundly blind and deaf, requiring a tube to feed, and suffering from a heart defect. But her mother, Tessa Prebble, said that within those limits she had been a joyous child, using the few senses available to her to revel in life.

"She was a very happy kid. She had things happening to her all the time that were pretty unpleasant, but most of the time she was smiling," she said.

Without sight or hearing, touch was the main connection between Eva and the outside world. Each person in her life developed a signature way of touching her - her mother's was a quick tap on the nose - and her daily routine was reinforced with little tactile signals.

TOUCHING MOMENTS: Tessa Prebble has no regrets about the short time she got to spend with daughter Eva, who was born ...
Cameron Burnell

TOUCHING MOMENTS: Tessa Prebble has no regrets about the short time she got to spend with daughter Eva, who was born both blind and deaf.

She loved having her chin tickled, her forehead rubbed. Tessa was playing with her using different fabrics as a way of communicating when Eva died.

"Eva was very tactile, she loved being touched. Before she would have a bath, I would lie her on sheepskin and she would know what was coming and get very excited."

Tessa's pregnancy was subject to a few scares, with concerns her child could have Down syndrome. But by the time she was born, tests had shown that, apart from a minor anomaly to one of her eyes, Eva appeared to be a healthy baby. New Zealand does not routinely test for Charge syndrome.

The newborn Eva was floppy and not breathing, requiring oxygen for the first few days of her life. In that first week, the bad news just keep coming: she was most likely blind and deaf, was missing part of her brain and had serious heart defects.

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Tessa said it was hard to accept she was a mother of a special needs child, particularly after believing she had overcome those fears during pregnancy.

"The only thing that helped me was I fell in love with her and she gave a lot of love back."

As Eva was getting older, and despite repeated health scares, she was starting to flourish. In the next few months, she was due to have cochlear implants, allowing her to hear for the first time, and surgery on her left eye.

She was beginning to support herself, rolling over, grabbing out to interact with her surroundings.

"It was pretty obvious by the time she died that she would have crawled and walked," Tessa said.

On Wednesday night last week, she heard Eva coughing over the baby monitor. When she went in, Eva was gasping to breathe, her lips turning blue. Despite the efforts of paramedics, she could not be revived.

"It was just a cold," Tessa said. "But for special needs kids, colds can be really serious."

Eva's funeral was on Monday and Tessa will eventually have to regain her life, go back to work and carry on. But she said she would remain forever grateful for the brief time she had with her daughter.

"I think she taught me the importance of everyone, and valuing everyone for what they can bring to life.

"It might not be what you thought, but it's still important."

Tessa Prebble wrote about her experiences on her blog: The One in a Million Baby.

 - The Dominion Post

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