I have a few tips for living with a baby with albinism, some that you might not automatically think of when your child is first diagnosed. Little things can make a big difference in comfort levels or lessening the effects of condition. There is also quite a lot you can do to help your baby's development to both make the use of the vision they have and to develop using their other senses.
It is very important for any baby with a vision problem to have their vision and other senses stimulated. Babies learn so very much from what they see so a child with poor vision needs to be encouraged to use what vision they have as best they can and also learn about the world despite the limitations of their sight. Tastes, textures, sounds and other sensory stimulations will help a baby learn and explore. The earlier you can start to get a child to look, listen, touch and mouth objects the better. If not exposed to a range of different textures, visually-impaired children can become 'tactile defensive' (not want to touch certain textures) and this can inhibit their learning experiences and slow development.
Some of the best objects
to give a baby to help their development are everyday household items like wooden
spoons, cloths (smooth, rough, soft, hard, etc.), scourers, plastic cups, kitchen
whisks and hairbrushes. These are things the child will encounter later in life
as well as being cheap and available. Foods, too, come in various colours, textures,
sizes and tastes but you need to supervise the baby with these. Anything you
give the baby needs to be safe and under supervision but be inventive and look
around your own home for things that a baby would like.
Toys that are brightly coloured, with good contrast, different textures, make
interesting sounds or light up are also very good. You still need to check they
are non-toxic and safe but there are some great toys for aiding all stages of
development.
Socially, too, a baby who doesn't see well can need some extra attention. We made sure to get a high-chair that reclined so that even before Alana could sit up she was able to join us at the table for meal times or be able to interact with us in various settings. Always keep talking to your baby and touch them often to let them know you are there and what you are doing. Let your baby be as involved with you and what you are doing as you can.
An Early Intervention Service can advise on visually-impaired babies needs regarding development and what to expect and work on. No matter how affected the baby's vision, there is so much you can do to help their development and the earlier the better. There are also good resources on the Internet about helping a visually-impaired child or a child with 'low vision' developmentally and socially. See my links page for more information and expert advice on developmental issues for visually-impaired babies (Developmental/Low Vision Info. section).
Vision
Lighting
Due to the fact that excess light enters through a pupil with less pigment than usual, it can be very discomforting in bright or glarey situations. This varies greatly from individual to individual but some simple measures can help a lot and not only aid visual clarity but make things a bit more comfortable.
Sunglasses
There are sunglasses available for babies now that fit quite well. We used 'Baby Banz' which although they still were a bit big in that first year seemed to help quite a bit. The only thing I will warn you about is the fact that they are held on using a wide strap that fits around the head instead of arms like a pair of regular sunglasses. Alana used to grab the lenses and pull them away from her face resulting in a nasty spring-back effect as the elastic snapped back! Alana preferred small glasses with arms but I hear a thin head-strap is more comfortable. So you may have to try different types to see what suits your child. The younger the better to acclimatize a child to glasses but expect them to keep taking them off until they appreciate the benefits the glasses provide.
Hats
A hat with a dark colour under the front brim helps stop reflected glare and is less distracting to a child. As well as giving sun protection a hat can really help with cutting back the amount of light that enters the eye. Again, expect the child to keep taking it off and get them used to it as early as possible.
Window Tinting on Cars
We didn't even think about this until Alana was about 10 months old. We already had factory-standard window tinting but upgraded to a window tint with over 90% UV protection and fantastic glare reduction but they don't appear excessively dark. You need to make sure you comply with legal limits but wow what a difference it makes.
Pram Covers
There are several different types but just one I can mention is Protect-A-Bub who has a website at www.protect-a-bub.com. There is nothing wrong with just a good piece of blanketing or material that will provide sunlight and UV protection but in climates such as ours in Australia its nice to have something that will allow good airflow in hot weather and give you the best UV cover. .If you can afford to buy a pram cover the things to look out for are great UV Protection Factor, good breathability, good fit for your pram, opportunity for visibility for the child to see out (who wants to ride in a paper-bag?) and quick and easy access to view/remove child.
Contrast
Position of Light Sources
Indoor Lighting
Ultraviolet Radiation (Sun Exposure)
Protection from Ultraviolet Radiation is a big concern with any young baby as their skin is especially susceptible sunburn and skin damage that increase the risk of skin cancers later in life, but add the complications of albinism (where there is very little or none of the melanin we need to provide UV protection) and sun exposure is even more vital. Living in Australia we are well educated in the dangers and risks associated with UV exposure and how skin cancers are so preventable with correct protective measures.
Expert advice should be sought if in doubt, one such source is The Cancer Council South Australia at www.cancersa.org.au but the basics are as follows:
Avoiding the times of greatest UV exposure (10am - 3pm) is advised and make use of natural UV protection (such as shade from trees, etc.), wear appropriate hats, clothing and whatever else is practicable.
Babies under one year old should not be exposed to the direct sun where possible. I have seen some advice to NOT use sunscreen on babies while others advise using small amounts of sunscreen to areas that cannot be protected with clothing. There are claims that there is no evidence to suggest that the use of sunscreen on small areas of a baby's skin is associated with any long-term side effects but that is your call. I would just try and avoid as much UV exposure as you can when they are so young and use protective measures as much as possible. You don't have to become nocturnal but here in Australia everyone should be so careful with the sun anyway you need to take the UV risks seriously.
When using a sunscreen you need to aim for a 'broad spectrum' cover to protect against UVA and UVB, look for a 30+ SPF (Sun Protection Factor rating) as that is the maximum that can be advertised in Australia due to labeling standards (the bigger the number the better) even if they are in fact a higher rating (other countries allow higher ratings numbers), and water-resistance is recommended if you likely to be in conditions like water or sports inducing perspiration. Lastly check the expiry (use-by) date as sunscreens have a shelf-life of two to three years and deteriorate if not kept cool and dry with the cap replaced tightly.
Apply as directed on the container to clean, dry skin at least 20 minutes before exposure to the sun and use liberally - usually about one teaspoonful of lotion for one arm and reapply about every 2 hours.
PABA-free sunscreens may provide less irritation if skin is sensitive and ones labeled for babies and toddlers generally have a gentler base and don't contain perfume although containing the same sunscreening chemicals as 'adult' products.
Finally remember that not only were the sunscreens probably tested on a person with more melanin and therefore may be less effective than on someone with albinism but the UV exposure varies greatly depending on a number of factors such as latitude, altitude, surroundings, weather, presence of water, season, time of day and other protective measures - you just have to be aware of UV exposure as much as possible.
Hats
Wide brim or neck cover (Legionnaire style) to protect as much face, ears, neck and shoulders as you can. Dark colour underbrim for visual comfort and made of a material with good breathability and UV Protection (SPF) rating.
Sunglasses
Make sure they meet appropriate standards and give maximum UV protection. Polarized lens are most effective in reducing glare and you may find the darker the better. Just be sure to get the best fit you can and persevere with getting babies to wear them as early as you can.
Best advice I can offer is learn to love the hair colour and be proud of it. But there are some fun things about white hair:
Perhaps one of the most fun parts of pure white hair is that when it gets wet it goes pretty well invisible, its great when swimming and you are tired of people noticing the 'really blonde' kid - get it wet for a disguise as the 'really hairless kid'. Also fun at the hairdressers when they use water-spray to help them cut the hair - with baby hair that is so fine it disappears and makes it hard to see.
Any form of colouring (paints, face-paints, food colourings) can cause a bit of hair colouring (because it is not coloured white it is actually colourless) if they come in contact with the hair and be a bit difficult to remove, but so far we haven't had too much trouble with jelly, pumpkin in the few things Alana likes to massage into her scalp - but it is early days for us! We try and keep anything highly coloured away from her hair but as she gets older she is sure to regularly get some unplanned hair-colouring. And beware, most children's shampoos contain quite strong colours and dyes to make them look a pretty yellow or pink or whatever, even this can eventually cause a bit of tinting if used excessively.
I have heard that swimming in a chlorinated pool can cause white hair to discolour somewhat more than ordinary hair but the amount of swimming Alana does weekly we haven't had any issues yet. I've heard good reports about special shampoo for preventing chlorine discolouration in hair but haven't had to try it yet.
Proper hair dyeing can be successful (although of course it will grow out and show white roots!) but it can give unpredictable results as most hair dyes are designed for hair with some pigment. Plenty of people with albinism choose to dye their hair but I think most choose not to. A lot choose to tint their eyebrows and eyelashes even if they don't dye their hair.
I am now used to Alana's snowy white hair and I really love it. I hope she grows up to love it herself and appreciates the fact that it is something that makes her special - but like nearly all teenagers I am sure when she reaches her 'teens' she will want what ever hair colour and type she doesn't have (like boring, straight brown) as it always seems we want whatever we don't have! At least we will save money on peroxide! There are so many people out there who just wish they got noticed, I will try and convince Alana that never 'just blending into the crowd' can be an advantage and that there are a great many people out there who would just love a full head of white hair!