About congenital cataracts

Julie - posted on 05/02/2010 ( 9 moms have responded )

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About congenital cataracts A cataract is a clouding of the normally clear and transparent lens inside the eye. It can cause blurry or hazy vision and be a bit like trying to look through frosted glass. It is not a layer of skin that grows over the eye or eyes.



A cataract is called congenital when it is present at birth. It is also known as 'infantile cataract' if it develops in the first six months after birth. It can affect one eye, which is known as 'unilateral cataract' or both eyes, which is known as 'bilateral cataracts'. Most children with cataract in only one eye usually have good vision in the other.



There are many types of cataract. Some affect vision and others never do. A cataract located towards the centre of the lens is more likely to affect vision and visual system development, although this will depend on its size and how dense the cataract is. Very developed cataracts can cause blindness in babies if left untreated.



Congenital cataracts can continue to develop, although this normally takes months to years. The ophthalmologist (eye doctor) will take all this into account when considering treatment.



Causes of congenital cataracts

Cataracts form when the protein in the lens clumps together which produces a 'clouding' or frosted affect. There are a number of reasons for this, including hereditary factors, infection (such as Rubella during pregnancy) and metabolic disorders, but in the majority of cases cataracts are idiopathic, meaning they have no known cause.



Approximately 200 children in the UK are born with some form of congenital cataract every year. Around one fifth of these have a family history of congenital cataract.



Cataracts can be dominantly inherited - that is passed on from one or other parent to a child because of a faulty gene. The parent may know that they have cataracts themselves but sometimes they may only have a tiny cataract which does not affect their vision and which they are unaware of. This is why it can be helpful for the ophthalmologist (eye doctor) to examine the eyes of the parents of a child with cataract, even if they are unaware of a problem with their eyes.



Most children who are born with or develop infantile cataracts do not have other medical problems but some do. This possibility will always be looked at by the ophthalmologist who will refer a child onto a paediatrician (a child specialist) if necessary.



The majority of children with congenital cataract will be able to attend mainstream school, read, play and go on to live full lives.



Cataract and visual system development

The visual system, that is the route of communication between the eye and the brain, goes on developing up until around the age of seven. During this period of development the eye needs to produce a clear image otherwise the system will not fully develop.



If one eye is sending poorly focused, unclear images to the brain, the brain will learn to ignore these images in favour of those provided by the 'good' or 'stronger' eye. This prevents the visual system from developing properly in the 'weaker' eye. This is known as 'amblyopia' or lazy eye. Amblyopia may result in permanent visual loss in one eye.



With unilateral congenital cataracts the brain tends to rely on the eye without a cataract and learns to switch off from the eye with reduced vision. In these cases it can be difficult to encourage the visual system to develop in the eye with the cataract.



If a child has bilateral cataracts the visual system will still develop but it would be limited and might result in some vision being lost permanently. Bilateral cataracts can cause amblyopia to develop in both eyes.



Diagnosis Every baby needs to be screened within the first 24-28 hours after birth as part of the National Screening procedure. Babies are normally checked again by a health visitor around six weeks of age. If a parent is concerned at any stage that their baby is not seeing normally, they should discuss this with their family doctor.



If the obstetrician or hospital doctor suspects that a child has a congenital cataract they, will arrange a full examination of the eye and lens. An ophthalmologist (eye doctor) would carry out this examination at hospital. If a child's cataract or cataracts are likely to have a significant effect on the child's vision, surgery may be considered under the age of three months. In these cases it is very important to get a referral to an ophthalmologist as quickly as possible following diagnosis.



The ophthalmologist would normally use an instrument called an ophthalmoscope which allows them to examine the inside of a child's eyes. The ophthalmoscope is held close to the eye but will not touch it. Sometimes a child will be given a general anaesthetic to allow the ophthalmologist to carry out an eye examination. This allows the doctor to look thoroughly at the baby's eye whilst he or she is still without causing any distress.



If cataracts develop later on in childhood, there may be noticeable outward signs if they affect vision. For example sometimes a child may appear to have difficulty focusing on certain objects or has to hold their head at a certain angle or they may develop a squint. In these cases the GP will refer you to see an eye specialist.



In only a few cases would a cataract change the appearance of an eye. A very advanced cataract can cause a child's pupil to look white, as the cloudy cataract can be seen through it. However, there are other causes of a 'white pupil' which would need to be checked as an emergency, as they can be serious.



Treatment Some cataracts do not cause visual problems and surgery would not be needed. If the cataract does affect vision, surgery will usually be considered to remove the affected lens from the eye.



During surgery, a small opening is made in the side of the cornea at the front of the eye through which the cloudy lens is removed using suction. A child will normally be kept in overnight so that the hospital can make sure they are recovering well.



Once the cataract lens has been removed, it may be replaced by a lens placed inside the eye (intraocular lens or IOL), although in most cases this does not happen and glasses or contact lenses will be required.



The consultant may recommend using a contact lens for a young child or baby rather than an implant. Because contact lenses are not implanted into the eye they are much easier to change or remove if this becomes necessary. Glasses and contact lenses will also often be worn by children who do not require or have surgery.



After cataract surgery

Following the operation the eye may feel slightly uncomfortable or itchy. The eye will be covered for a few days to help it heal and protect it. The hospital will provide you with eye drops which will help to prevent inflammation or infection, and are usually used for a month or two to help the healing process. Eye drops are used as soon as the dressing covering the eye is removed. This usually happens the day after the operation. If the eye seems to be uncomfortable, the hospital may also consider a pain reliever.



The doctors will monitor post-surgery recovery and check on progress. They will also advise on the use of any medication. The nurses will show parents or carers how to put drops into a child's eye before he or she is discharged from the hospital. They will also go over any post-operative care techniques, such as bathing the child, wearing a plastic eye shield, or keeping the eye clean without wiping inside the eye or washing it out.



It is important to protect the eye and keep it clean following surgery, including being careful not to get dirty water or shampoo in the eye. This is to give the eye the best chance of recovery and to minimise the risk of infection



The hospital may provide an eye shield to place over the child's eye, especially at night. This helps to protect the eye as it can usually stop the child from rubbing it after surgery. The hospital would also say when and for how long the shield should be used. Patients or carers are normally given a sheet of post-operative care instructions which includes this kind of advice.



Post-operative complications

Later complications such as glaucoma, eye infection and retinal detachment may occur following surgery in around two per cent of cases. There is treatment available for these conditions and information is available from the RNIB.



Complications are more common when a child under the age of one has had surgery for congenital cataract. A child will have more frequent check ups in these cases.



If you notice any swelling, bleeding, a lot of stickiness, pain or redness in or around the operated eye, then prompt medical attention is required.



These problems can often be treated successfully if they are caught early enough. If you have any concerns about your child's eye or post-operative care, contact the hospital where the surgery took place. Parents and carers will often be given 24 hour contact details before leaving the hospital.



Patching

Following surgery, vision in one eye may be better than in the other and patching might be necessary. Patching is when one eye is covered with a patch to encourage a child to use their other eye.



•the 'stronger' eye may be patched for several hours a day in early childhood

•patching aims to encourage the visual system in the 'weaker' eye to develop

•if the consultant's patching advice is strictly followed, the better the chance of visual system development in the weaker eye

•patching may also be used in cases where surgery is not considered necessary, for example if the cataract is not considered to be dense or large enough to merit an operation

•sometimes drops can be put in the stronger eye to blur vision rather than wearing a patch

•the orthoptist at hospital will be able to advise on the various ways to help a child to develop their vision as much as possible, such as glasses, eye exercises and patching.

MOST HELPFUL POSTS

Kathy - posted on 05/02/2010

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good info about cataracts. too bad there is not a central resource for the parents. the docs just tell her what to do but not how to get a baby to actually do it. if I didn't work in the field, my daughter would really be at a loss. there have to be other parents out there who are going thru some of the same things that she is. looking for any ideas!

Julie - posted on 05/05/2010

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lol some times doctors make you feel a lot worse
instead of helping and offering support as well as the eye problem my daughter has she also seems very flexible now in my family we have a history of below average muscle tone and i have been trying to get safiyyah seen for this problem for the last 3 months and the doctors say she is still within the norm for development but to me i am just not happy and want her seen next week finally we have a appointment for her to be seen but again i wounder is she just lazy i think there needs to be more support groups for mums with concerns about development with doctors who are will to give there advice on what we can do to improve i agree with you about the crying i dont like to here mine cry and when i put them to play if one of them starts i haven't got the heart to leave them i have to pick them up

9 Comments

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Tess - posted on 05/05/2010

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I also agree there should be some support group, lol its hard to no know how to help you child. I just want him to be able to see like I do, and I dont know what he can or cannt see. I finly got an appnt. for Logan to cheeck the fit of his contacts again to see if they can help him, but thats not until may 17th. I'm glade they are in a hurry...haha

Tess - posted on 05/04/2010

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Julie thank you for the info! Logan will sit on the floor by himself and go in a walker for a little but not like I would think he would want to. I'm trying to figuar out if he is just lazy or really just needs me. I dont like him crying to much or his contcts fall out. And I didnt want to say congenital cataracts but bilateral cataracts. They dont know when his stared or why. They just found it odd they were hollow in the middle. All the doctors tell me is he need to keep contacts in so he will have a change to be able to see but when they fall out and it takes a week to make them they say its ok he and go alittle with out them. So I dont understand and I never get a straight answer from them. Then when I ask if its normal for him to seem to be slower at devoloping the walking and crawling they tell me he will be as delayed as I let him be. If I dont let him try then it will take him longer. Which I understand that but its almost like he is scard to do anything.

Julie - posted on 05/04/2010

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Tess my daughter safiyyah had some issues with her vision she dosent have a congenital cataracts but she is almost 9 months and not crawling yet and has only just started to try and sit up it was hard for us becouse she one of a twin and her brother is crawling,rolling and pulling him self up to stand i try and put her on the floor a lot and also in a swing which has helped her and also a baby walker which she seems to like i think your baby will do things but in his own time like safiyyah she has just started to to more

Tess - posted on 05/03/2010

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Kathy I live in Greenville, Ohio Logan has too been in hard contacts snce right after both surgeries. We are in our 5th cut and they fall out at least 15 times a day so I am always on him cheecking him so I can try to find them. They tell me gravity will pull them out easily with them being soo thick. They are falling out less then the past. They have fit him for glasses we have been waiting for those to be made for 5 weeks soo we should have them soon to help when we lose a contact the left eye tends to fall out more then the right. I am sure Logan will start crawling soon if he ever lets me put him down...lol he likes to be held. But dose this delay their crawling? or make it harder to walk. I know he didnt roll over until he was 7mths. They learn so much right now and all I want is for him to be able to have a change at a normal life and be able to see. I am beside myself on not knwing what else I can do to help him

Kathy - posted on 05/03/2010

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where are you Tess? we are in Garden Grove CA. Amaris is sighted in one eye, so the treatment is not the same but some of the challenges are. If there is a chance that what you do now would get your child some vision I will assume that you would do whatever it takes. True the docs don't want to get your hopes up but information at this stage is vital. This is when the brain is developing rapidly. Amaris has worn a contact since right after the surgery on the affected eye at age 4 months. Is your child able to wear contacts?

Tess - posted on 05/03/2010

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I found this very helpful, I wish it was up when we were first going though this. They found my 5mth old had bilateral cataracts and did sugery to remove them in 12 hours after finding the cateracts. He is now 8mths and doing well I keep my fingers cross it keeps going well but the doctors dont like to tell you too much to get your hopes up soo its hard

Julie - posted on 05/03/2010

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I dont know were you are from but this help line is in the uk but if you look at the web site they have a forum and i think a email adress for other coutries just type in www.RNIB.COM or just Rnib





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