Your Baby Has Aniridia

Your baby has aniridia?
Important things to think about when helping your baby develop[1]
Aniridia in practice
Aniridia results from abnormal eye development during the foetal stage. The condition often presents in combination with optic nerve and fovea damage. Light sensitivity is the most prominent symptom, as light intake is not regulated by dilating or contracting pupils. Nystagmus (involuntary rapid, jerky eye movements) is another common problem. Symptoms may present individually or in combination, resulting in mild to severe vision impairment. Other vision problems include long-sightedness, near-sightedness, astigmatism and strabismus (squinting).
Your child is light sensitive. This means that single strong light bothers him/her very much - like the light from the Sun or some single indoor lamp with a visible light bulb. The best light is even light. You can probably notice when your child complains about the light. You can try and lower the intensity and see what happens. For this it is good to have dimmers for all indoor lights. You can also notice how your baby reacts when there is too little light. Since the eyes of a person with aniridia are not capable to regulate the amount of light reaching the eye bottom, it is you that should regulate it for him/her by adjusting the light. Indoors it is less of a problem since one can use curtains, different types of window shades, lamps etc. while outdoors it is a challenge. One can not turn down the Sun.
Indoors

One of the most important things for good indoor lighting is even light with dimming possibilities.Even light means that the light sources should be distributed evenly in the room. A good indoor light can be achieved if one has indirect light, for instance light facing the ceiling in the corners wall/ceiling around the room (Image 1.) or a central, pendant lamp that distributes the light upwards. An example of such a lamp can be seen on Image 2.

Many evenly distributed spot lights can also be a good solution. With the dimming solution one can provide various indoor light environments.The problem with them is that they consume quite a bit of electricity and produce a lot of heat in the room.

Image 1 Hidden lighting, Orac decor,

It is rather difficult to find a lamp on the market which has a hidden light bulb, gives a pleasant light and is nice to have in an apartment. The lamp on image 2 is an office lamp and might give a "cold" impression in an aparment. On image 3 is an example of a lamp that gives pleasant indoor light (the bulb is hidden in the upper cone of the lamp), in combination with the wall/ceiling hidden lighting.

Image 2 Fagerhult Lamp Ten° Circle 600,

Image 3 Secto Design, Octo lamp

For all the lights it is essential to have dimmersso that the intensity of the light can be easily regulated. Your child can not regulate the amount of light that comes into his eyes and therefore you should provide him/her with a dimming solution.

Candle light can for some people with aniridia be very unpleasant. Others do not mind it. You should observe your child how it reacts close to candle light. Or you could choose to avoid alltogether having candle light before your child can talk. A person with aniridia has explained that for some people, if a candle is lit on the table that the whole table including everything on it can be perceived black.
In order to see specific objects it is often needed to have focused lamps - single lamps that have strong focused light. This will make it easier for your child to see things. Of course the lamps should have a light bulb which is hidden.

Christmas lights

The experience of some people with Aniridia and parents with children with Aniridia is that Christmas lights do not bother them, since usually the lights are not hight in intensity.

Windows and glazed areas

It is important to install some shading on windows and glazed areas in your home. This is not an easy task since again you should provide with good alternatives, and choose an option most suitable for your living surroundings.

Movable (as roll down) solar films with UV protection and possibility to see through are a good choice. These shades are installed on the inside of the window. In Norway a company that produces roller down SUN-X shades is Markise HACO ( In Sweden an alternative company is BERGAFLEX ( .

There are also options for installing on the outside, which are more expensive and do not provide the same see-through effect as the solar films. One such option is Sunworker, produced by Dickson (

Retractable awnings (Image 5) are a complementary product to the UV roll-down films. They are installed on the outside of the windows and glazed areas and are important for taking away the glare from the sky as well as the direct sun beams entering the room. Even when the sun is not shining the sky might still be reflecting a lot of glare which is very uncomfortable for people with Aniridia.

Outdoors

When the baby is small, one mostly uses a stroller. It is important to protect your baby from the strong daylight, especially from the direct sun. You might notice that even in a cloudy day your baby shuts her eyes. It will pass some time before your baby gets her first sun glasses. Usually it happens around forth or fifth month. Before that, taking your baby our of the stroller, outside, is almost impossible. She might cry and be even more unhappy from the strong light.
One way to protect a baby in the stroller is to have a cover. Never use a light colored cover! Light colors give strong glare to which your baby's eyes are sensitive. Instead choose a darker color. Remember that your baby also needs air.
When the baby is bigger and can be possitioned in a sitting position, a very good product to use is "Shade-a-babe Zip n Go", Image 6. It can be used on various strollers. An advantage is that it is also a good mosquito protection.

Image 6 "Shade-a-babe Zip n Go"

Once your baby gets sun glasses you can start using baby carriers, like Baby Bjorn. On a sunny day, it is advisable to use a hat in combination with the sun glasses, since they are not enough protection. Even with all that keep your baby out of direct sunlight - so that it doesn't look towards the sun. Babies are curious about the light. If it is too sunny one can in addition use a sun umbrella, Image 7.
Have in mind that even on a cloudy day there is still a lot of light which is reflected from the clouds. Also when you are in shade, light reflects from things around, like buildings, water...
There are many different sun glasses one can buy. As with adult they fit babies differently so one has to try many before one finds one that fit well. Many people with aniridia feel mostly comfortable with blublockers – glasses that block out blue part of the light. We tried several glasses, one from baby banz ( and another from Julbo ( In Sweden one can buy the Julbo sunglasses at Synsam or add nature (cheaper). Julbo glasses fit very well our son – especially because they do not go around the ears but have a good grip of the head instead. They also have an option of a band that goes around the head. The only problem is that one can not pack them easily, since they do not bend as normal glasses do. They block very well the light and should be used for sunny days outside.

Another tip for sunglasses that we got from an adult person with Aniridia is the company NoIR Medical Technologies ( They have a very good offer of over 50 different colours of glasses for different types of vision problems. They have a good offer of glasses for adults, children and babies. The NoIR filter systems offer ultraviolet, visible and infrared protection, managing the light that reaches the eyes to maximize functional vision. By reducing disabling glare and enhancing contrast, NoIR filters often increase mobility and provide relief from the light-sensitivity and discomfort related to most vision-impairing eye conditions.

It is difficult to know which glasses are best for your baby since he/she can not tell you if they are blocking enough or too much light. Observation is the best way as well as testing different options. Glasses that change with the amount of light are also a good option, but often it takes time for them to adapt and there might be periods when your baby might feel uncomfortable. The best option is to have several glasses for different types of light.

In the car

It is important to provide UV protection on the car windows. Even though glass filters some part of UV light, it still doesn't filter the whole spectar. Make sure you have adequate sun protection in the car. Have in mind that your baby sits fixed in the car chair unable to move away the look. Often, it happens that one needs to turn so that the sun comes straight from behind. Some car chairs (like MaxiCozi) have sun protection installed. This is very helpful to protect your baby from side light. Remember that the whole glass surface needs to be treated since even a small whole can create very uncomfortable situations for your baby. Sun films often provide almost full UV protection. Still, when the light is strong even that is not enough. One additional solution are window shades that one can attach easily on the car window. Often the best is the shades made specifically for the car you drive, but on the market one can find also universal shades. One good example is "Shade a babe", Image 8. Your baby should have sun glasses on. Sometimes it is difficult to make your baby have the glasses on. It is good if there is someone sitting next to your baby to make sure the glasses are on all the time.

Your baby is still a baby

And you would like to take some pictures without using flash
You might have noticed in some of the first pictures you took that your baby has red eyes. Their eyes are completely red, compared to similar situations when you have red eyes on the photographs. It is not advisable to take photos with a flash which directly points at your baby. Therefore you need a camera which has a flash pointed to a different direction, which enables you to take pictures indoors. Compact cameras are good for taking pictures outdoors, while indoors you would need many pictures to be taken before you get one which is not blurred.

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[1]Information in the document was assembled and compiled by Ivana Kildsgaard, member of the network Aniridi Sverige with the help of Anita De la Fuente, Hilde and Cathrine Hansen, all from Aniridi Norge, Cheree Ridzon, Patti Caprarella Young, from Aniridia Awareness group, Neven Milivojevic, from Aniridi Sverige,

The document is continuously being updated with new information