You should get an appointment to see a Paediatric Ophthalmologist (an eye consultant who specialises in treating children) promptly if your child is thought to have a cataract, usually within a week or so. There have been a number of cases of children’s details disappearing from hospital systems or referral letters being lost, so make sure that you know when your child’s next appointment is at all times and if you find yourself not knowing, it is very important to get it sorted out quickly. Children who get lost from the system are at risk of sight loss.
Preparing your child for hospital visits and treatment
There really isn’t much you can do to prepare a young baby for hospital treatment. If your baby is due to have an anaesthetic, you would usually only need to stop breast milk at the time when you would stop giving an older child water before an anaesthetic – formula needs to be stopped at the earlier time when you would stop an older child having any more food. If the instructions you are given on this aren’t clear, check with the hospital.
Older children (toddlers upwards) may find role-play helpful both before and after the hospital visit. You can use dolls, teddies and props and turn it into a game of doctors and nurses; many parents also like the Fuzzy Felt Hospital set. It can be helpful to talk through the things that are going to happen so your child feels more confident that they know what’s coming. Afterwards your child may want to act out their experiences again to help them to understand things and, if it’s been difficult, to get it out of their system.
General books about trips to hospitals or doctors are worth getting hold of for slightly older children and there is also a booklet called ‘Tom’s visit to the eye hospital’, written in conjunction with Great Ormond StreetÂ Hospital available free of charge to families from the NBCS. It’s also a very good time to use bribery and treats as required.
If your child has bilateral cataracts (in both eyes) that are totally blocking, or seriously reducing their vision they will need surgery to remove the lenses in his or her eyes so that enough light can get in and they can see.
If your child has a unilateral cataract (in one eye), you will need to make a decision, along with your child’s surgeon, about whether to try to get as much vision in the eye as possible, or whether you would prefer not to do this. Unilateral cataracts are often found at the first examination by a paediatrican within a few days of birth but some are found after three months of age. The older your child is the lower his or her chances are of developing good vision in the affected eye (if it has been there since birth).
Before making a decision about this, you should have the chance to talk everything through with the surgeon and you might want to read the sections on patching and on unilateral cataracts. It is difficult for children who have had unilateral cataracts removed to develop really good vision in the affected eye, although a few do and many develop some useful vision. They and their families will have years of patching the other eye for many hours of each day.
If your child has a partial cataract in one eye your consultant may suggest that you patch the ‘good’ eye without having the partial cataract removed so that vision can develop in the affected eye. Some cataracts grow with time and some do not, different types of cataract are more or less likely to grow. The partial cataract may be removed later when the risk of complications from the surgery is lower or possibly never removed if it doesn’t grow, so long as the eye is still able to learn to see. Alternatively, your ophthalmologist may think that it’s better to remove the cataract now if it’s already too big.
If your child has partial cataracts in both eyes, your consultant may suggest that surgery should be done later, when the risk of side effects is lower, or that it should not be done unless they grow.
You will be given eye drops to put in to your child’s eyes after surgery many times every day and all night. This is really hard going at first, but it is crucial that you do all of the drops exactly as you’ve been told as they help to stop serious complications like infections and other problems happening. The eye drops are very important.
When should surgery be done?
If your child is born with a cataract or two cataracts and has very limited or no vision it is important that this surgery is done early as it will be harder for your child’s eyes and brain to learn to see if surgery is delayed. When surgery is done after about 3 months of age there is a greater the chance that your child’s vision will not catch up so well.
Many surgeons would prefer to do this surgery at about 4 to 6 weeks of age if possible as they feel that this reduces some extra complications that might happen when surgery is done in the very early weeks of life. Other surgeons feel that the risk of the eyes and brain being deprived of the early chance to learn to see, is a bigger risk than that of other complications, so would prefer to operate sooner.
If your child has other problems as well as the cataracts, or features of their eyes which make surgery complicated, it may be that your child’s surgeon will want to operate later than normal or sometimes sooner, to give your child the best chance of the best vision.
If your child is having two cataracts removed, the surgery will usually be done on each eye separately, a week, or so, apart. This is just in case of infection in the eye after surgery. This is rare (less than 1 in 500 operations) but serious.
Patching or ‘occlusion therapy’ is when the stronger eye is covered to allow the weaker eye to develop better vision. Its not just the weaker eye that is learning to see while the other one is patched, it’s also the parts of the brain that deal with the information from the eyes that need the extra practice.
The technical term for a weaker eye is ‘amblyopia’ and it’s often called a ‘lazy eye’ as well. Many children who do not have cataracts develop a weaker eye and lose some vision in it if it’s not spotted and treated with patching while the child is young.
When there has been a cataract in only one eye, that eye has a lot of catching up to do compared to the other one so it’s quite usual for your child to have to wear a patch over their stronger eye, for a lot of the time they are awake, until they are about seven or eight years old.
Patching can be fairly hard work as many children rip the patches off, or feel upset that they can’t see very well, especially at first. Most younger children need a lot of distracting to keep their patch on for long enough each day. This can be tricky for parents and also for anyone else who cares for your child. Older children may feel self-conscious wearing an eye-patch to school, although patching is normally over by the age of eight and it may be possible to get enough hours done outside school hours. There is a lot that parents, carers and teachers can do to help overcome self-consciousness.
When there have been cataracts in both eyes and one eye is weaker, you may possibly need to patch the stronger eye a little to allow the weaker eye to catch up, but this would be for much shorter periods of time. This needs to be very carefully monitored by your child’s orthoptist and ophthalmologist, as it is possible to make the stronger eye weaker if this is not done properly.
After cataracts have been removed from both eyes if the difference in vision between the two eyes is not large and patching is difficult sometimes the weaker eye can be treated by blurring the vision in the strong eye a bit rather than covering it totally. This can be done by leaving out one of your child’s contact lenses for part of the day or by giving him or her glasses that leave one eye blurred, just for part of the day. Sometimes the strong eye can be blurred by putting drops into it, but this only works if the stronger eye still has a natural lens and has not had cataract surgery
For more on patching, see our article on Patching or Occlusion Therapy
Visual stimulation after surgery
If you imagine that you suddenly developed an echo-location sense like a dolphin or a bat, at first all the weird clicks would mean nothing to you; you might find them annoying and they certainly wouldn’t tell you anything about the world around you, you may do your best to ignore them. After a while you might start to notice that the clicks sounded different when you were in different spaces and from that you might be able to start to understand that they mean something and then later, as you got better at understanding them, you could use them to tell you about the textures and the shapes around you, but it would take time and practice before you would be able to use your new sense. It’s also been described as a bit like being in a foreign country where our ears hear the words, but we don’t understand.
This is how it is for a baby after a cataract operation; their eye isn’t very good at picking up the light signals and their brain can’t understand the nonsense coming in through the optic nerves. Visual stimulation is just a way of helping your baby to learn to see by giving them easy things to start on and the encouragement of your attention. Things with flashing lights are good, bold black-and-white pictures and shapes are good as are mirrors and toys that reflect light, twinkle or are very brightly coloured. Toys with sounds that are made when a toy moves like little bells can help your child to relate what they’re hearing to what they’re seeing. The more visual stimulation you are able to do with your child, the easier it will be for them to learn to see. It may be quite a long wait; sometimes several months before they seem to be responding to things they see but keep going, it’s worth it.
Checked for medical accuracy by Miss Isabelle Russell-Eggitt, Consultant Paediatric Ophthalmologist, Great Ormond Street Hospital, London