Discovering your baby has nystagmus

My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life.

I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is 6 weeks old. She stares straight into the camera and at this age she was already tracking the flowers in the garden wafting in the breeze above her head.

Yet at her very next baby clinic check up a few weeks later her eye movements and lack of control of her direction of gaze were already so pronounced that the doctor panicked and told me she thought my baby was blind.

We were given an appointment at the ophthalmic hospital and the rest is history: a diagnosis, marking the beginning of a lifelong journey where we didn’t know what the destination would be.

“I think I can pinpoint the day her nystagmus arrived.”

So what happened? I really don’t know and can never be certain, but my calm, contented baby girl suddenly became fractious and agitated and couldn’t be pacified on one particular day.

She was just 9.5 weeks old. We had gone to the zoo as a treat for her big brother. It was a very bright sunny day. It soon became clear that my daughter was not enjoying the trip. She started to scream and couldn’t calm down. She wouldn’t feed. She wouldn’t be cuddled. She couldn’t settle in her buggy or even in the car on the way home.

When we got home we bathed her, but she was still screaming. We tried to feed her, but still she screamed. We put her in her cot and closed the curtains against the bright sun and finally she slept, exhausted. From that day on her eyes were never the same. She was calm again, but the nystagmus was there, manifesting itself with wide, sweeping eye movements and a marked head turn evident as soon as she began to sit up.

What happened to cause the nystagmus or was it there all along? Could it really just have been a reaction to that bright sunshine? What switched inside my little girl’s brain? Is this really how her nystagmus started or just the way I remember it? So many unanswered questions, even today. And that journey to the unknown destination? We’re still on it … together.

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My beautiful baby girl is now a gorgeous, happy, successful and charming young woman. OK, so I’m biased! But she certainly never lets nystagmus get in her way.

The shock of being told that there is something wrong with your child’s eyesight never goes away. Because every case of nystagmus is different, it’s difficult for the medical profession to give a truly accurate prognosis. Left with more questions than answers, parents sometimes flounder with only one option: wait and see.

So where can anxious parents turn for help and support? In my case it was the Nystagmus Network. Their Facebook page makes it possible to communicate with the whole nystagmus community. There’s also a whole army of nystagmus ambassadors out there in the blogosphere: articulate young people who tell it like it is. Writing for their peers their words bring invaluable hope and understanding to parents, too.

So, parents, make use of all the resources, literally at your fingertips. We’re all on the same journey and we will get there. We don’t just have to wait and see any more.

“We’re all on the same journey and we will get there.”

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Keri Thompson

I am Dan and I joined the Nystagmus Network in 2016 as the Executive Information and Development Manager.

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