Sienna Shah: Mildura teen’s remarkable story of survival

When a Mildura mum gave birth to twin girls, they came close to dying. Today one of them, now 13, has already had 13 surgeries. This is her story.

Mildura’s Sienna Shah is only 13 and has already had 13 surgeries.

Sienna and her twin Isabella were born premature on 17 December 2008 in Melbourne. Sienna was born with a rare condition called Goldenhar Syndrome. It meant she was born with a disfigured face and a large tumour in her right eye.

Since then she‘s had 13 surgeries at Royal Children’s Hospital and the Royal Eye and Ear Hospital – with more to come.

Her parents Alison and Greg said she had a cleft at her five month ultrasound when they knew something was wrong.

“When she was born she was born with a cleft, she had a big tumour coming from her right eye, she had these little tags on her ears and she was born without a thyroid and her face was misshaped,” Alison said.

When she was five Sienna had delicate surgery to remove the tumour and have a cornea, from an organ donor, transplanted.

“It [organ donation] helps so many people and it is probably one of the greatest gifts you can give to someone,” Sienna said.

It didn’t give Sienna’s right eye 20/20 vision but it did change her face which gave her confidence and her family comfort knowing they had tried.

“Because she had the tumour from a baby, the part of her brain responsible for the vision never developed so we knew from a very early age that she would need a corneal transplant,” Alison said.

“It restored a little bit of vision but she is still legally blind in that eye. It was more for cosmetic purposes because the tumour bulged right out of her eye, she couldn’t close it or anything.”

Sienna doesn’t recall having the transplant but it made a difference to her life.

“It meant I could get at least a little bit of vision,” she said.

“I feel pretty lucky to have this gift.”

Sienna said she has received support from Vision Australia but has also learnt to manage on her own.

“It is hard sometimes because I see people staring but I’m not too bothered by it,” she said.

Her mum Alison says she is just grateful to have her grown up baby girl by her side.

“We almost lost them [Isabella and Sienna] and Sienna was a bit touch and go for a while so above everything we are just so grateful,” Alison said.

She has been so inspired by her daughter’s story she decided to become a nurse.

“I was so impressed with the way the nurses looked after her that I went to uni and became a nurse,” Alison said.

Today Sienna is in year 7 at Trinity Lutheran College and her favourite subjects are English and maths.

She also loves to draw, and hang out with her friends, including her twin sister.

“The best part of having a twin is that I get to see her at school every day because we have all the same friends and everything,” she said.

Sienna‘s getting on with her life but she still remembers — and appreciates — the man who gave her the gift of some sight.

The Shah family writes every Christmas to his mother.

“His name was Mat and he was in his 40s,” Alison said.

“We write to his mother every year to update her on how Sienna is doing and to let her know what an amazing gift Mat gave to us.

“It is really humbling.”

To become an organ in less than one minute, visit donatelife.gov.au

To donate to the Good Friday appeal click here.