PARENTS

One Of My Twin Daughters Will Never Smile

20/07/2012 11:27 | Updated 22 May 2015
One of my twin daughters will never smile: Ines who has Moebius Syndrome with her mother and twin ImenWorldwide Features

Salia Amdouni, 39, from Portsmouth, was devastated when she was told one of her twin daughters, now nine, would never smile due to a rare congenital neurological disorder.

Here's she shares her story...

A photo of my twins stands proudly on my mantelpiece. It shows two happy little girls dancing around the living room. They look identical, but peer a bit closer and one thing isn't the same.

Imen's face is plastered with a smile - but her sister's isn't. Not because she isn't happy - but because she can't smile.

I'd been so excited about my twins arriving. My husband Adel, 42, and I had been trying for a baby for five years.

"It's like buses," I'd joked. "We wait ages for one and then two come along at once." I never felt worried or overwhelmed and it helped that the pregnancy went smoothly.

In March 2003 I went into labour 15 days early. The babies arrived safely. First Ines at 6lb, 1oz - doctors used a ventouse to get her out - than Imen arrived by Caesarean weighing 7lbs.

One of my twin girls cannot smileWorldwide Features

But I was losing blood and Ines was taken straight to intensive care, struggling to breathe. Eventually we were both stabilised and I was allowed to finally have my first cuddle with my beautiful girls.

But the magic didn't last long. The doctors said they needed to take Ines for tests as they thought something was wrong with her face. I couldn't see anything wrong with it - to me, she looked beautiful. But they said her face wasn't moving as it should.

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She couldn't open her mouth to feed, she needed a tube. It was as though her face was frozen. She wasn't crying either.

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We waited whilst they gave Ines endless tests. But a few days later the doctors admitted they didn't know what was wrong with her. Three times a week we kept going back for more tests.

One of my twin girls cannot smileWorldwide Features

She had blood tests and MRI scans. But there were no answers. Ines still wasn't crying and she couldn't open her mouth properly. So we had to feed her with a special soft bottle. Apart from that, she did everything the same as her sister.

A few months later though they became more different. Imen was learning to smile and giggle. She started making her first sounds too. But Ines remained silent and expressionless.

At five months they started to crawl and Ines's body strength seemed fine. But her face was still so weak. She could still only manage liquids through a soft bottle.

Then finally a few weeks before the girls' first birthday the doctors finally had some answers. They thought Ines had Moebius Syndrome. They explained it was a rare congenital neurological disorder, characterised by facial paralysis and the inability to move the eyes from side to side.

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I couldn't believe it. I was being told that my daughter would never smile. And there was no cure. It was devastating news.

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Ines had constant physio which started a week after her diagnosis. A year later they started to give her speech therapy. But the main source of help was Imen. She wasn't just Ines's twin - she was her teacher too.

One of my twin girls cannot smileWorldwide Features

Ines heard Imen crying and started making little grunting noises in her throat. She saw her laughing and her eyes sparkled. Sibling rivalry can be a problem, but for them, it helped.

Then as Imen got older, she asked why her twin was different. One day I found her in front of Ines pushing her cheeks up. 'This is how you do it,' she said. I told her that it was because Ines was special, that's why she was different. The years passed and that belief never faltered for a second.

Ines needed a walking frame to take her first steps. Doctors said the muscle weakness in her face was affecting her sight and hearing too, so aged six, she got a special hearing aid and glasses. She had to go to a school for children with special needs because her speech was still so slow.

Three years later with constant physio and therapy, Ines could speak a few words. To me it sounded as sweet as poetry. And it meant that she could now go to mainstream school, just like her sister.

Now aged nine, her speech has improved and her movement has got stronger. She is running and leaping around like any other little girl. Imen is a tomboy whereas Ines is a real princess.

She loves dancing and all things pink. And gradually Ines has started to laugh. It's not your average laugh and there is no smile with it, but I can hear the chuckle in her throat and see the twinkle in her eye.

I know things are going to be hard for my daughter but she's got such a big brave heart, I know she will be fine.

Words Lucy Laing at Worldwide Features

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