YOUR BABY HAS ANIRIDIA?
Important things to think about when helping your baby develop1
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, nearsightedness, 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.
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Image 1 Hidden lighting, Orac decor, http://www.oracdecor.com/ http://www.walldecor.se/
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,
http://www.fagerhult.com/shop/produkt.asp?sprak=1002&kategori_id=8&serie_id=202&produkt_id=537
Image 3 Secto Design, Octo lamp http://www.sectodesign.fi/index.php?id=38
For all the lights it is essential to have dimmers so 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.
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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 (http://www.markisehaco.no/). In Sweden an
alternative company is BERGAFLEX
(http://www.bergaflex.se/) .
There are also options for installing on the outside, which are Image 4 solar film on roll
more expensive and do not provide the same see-through
down. Markuse HACO
effect as the solar films. One such option is Sunworker,
produced by Dickson (http://www.dickson-constant.com/).
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.
Image 5 Retractable awnings
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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" http://www.shade-ababe.co.uk/acatalog/shadeababe_black_single.html
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,
Image 7 Taking your baby outdoors on a sunny day in a child
water...
carrier
There are many different sun glasses one can buy. As with adult they fit babies
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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 (http://www.babybanz.com/) and
another from Julbo (http://www.julbousa.com/baby/). 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 (http://www.noirmedical.com/). 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
Image 8 Car window sun shade,
http://www.shade-ababe.co.uk/acatalog/car_window_shade.
html
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
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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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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
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