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Nystagmus is ... this Christmas

In the run up to the festive season this year, the Nystagmus Network is letting everyone know how nystagmus affects the many children we support so that more people will understand what nystagmus is.

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Nystagmus is ... this Christmas

Small babies with nystagmus sometimes can’t recognise their own mother’s face

My baby doesn’t look at me

Every now and then a Mum calls the Nystagmus Network support line and, because she’s sounding so upset, I know what she’s going to say: “My baby doesn’t look at me.” This happened again just last week. Every time, it brings back for me one of the most painful memories of having a baby with nystagmus.

I was a new Mum, for the second time around. My beautiful baby girl was going to make my little family complete. All I wanted to do was hold her, love her and keep her safe. I cuddled her in my arms and felt overwhelming floods of brand new maternal love.

It’s different for nystagmus Mums

I would gaze at my daughter’s face as I held her and fed her and I’d feel that strong bond building that I’d known with my first baby. But something was different this time. Unlike all those mother and baby adverts on TV and those romantic images of motherhood in magazines, where perfect babies gaze lovingly into the eyes of their mothers, my daughter didn’t look at me.

Fast forward to wearing the same coat every day and always standing in the same place at the school gates, to her despair when she rushes up to another woman, thinking it’s me, to her anguish when she fears she’s lost me, yet again, in the crowd.

Clinical proof

In 2016 researchers compared how children with and without nystagmus look at faces and were able to verify what Mums were experiencing. The nystagmus eye ‘wobble’ creates strobe vision, which makes it difficult to recognise even familiar faces.

The study was funded by the Nystagmus Network and led by consultant paediatric ophthalmologist Jay Self and his team at Southampton Children’s Hospital, in collaboration with the psychology team at the University of Southampton and clinicians in Cardiff and Plymouth.

Children were shown two different images on a computer screen at the same time. The length of time they spent looking at each image was measured.

When shown photos of their own mother’s face and that of another woman, children without nystagmus spent longer looking at their mother and found her face very quickly, whilst those with nystagmus looked at both faces for the same length of time without showing signs of recognition.

Does my baby even know it’s me?

Back to that Mum on the end of the phone line and to all the new nystagmus Mums out there … Yes, your baby knows who you are. She recognises you by the scent of your skin, the sound of your voice and the warmth of your arms around her. She just doesn’t know what you look like yet …

Please help the Nystagmus Network to fund more studies into nystagmus, to improve diagnostics and gain better understanding of this complex condition.

Thank you

Updates

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