About two hundred children a year are born in the UK with an opaque (cloudy) lens of one or both eyes, which is known as a cataract. Most children born with cataracts are otherwise healthy and many will have other family members born with cataract. However, in some cases, cataract is a sign of a syndrome such as rubella, Down syndrome, Lowe syndrome, Nance-Horan syndrome, galactosaemia, Marinesco-Sjögren syndrome, Cockayne syndrome, Hallermann-Streiff-Francois syndrome, Pollitt syndrome, MICRO syndrome, Pierson syndrome, Werner syndrome, Rothmund-Thomson syndrome, Zellweger syndrome or Conradi-Hunermann syndrome.
If cataract is the only abnormality of the eye, and in particular if the eye is of normal size and the child is treated within the first few weeks of life, the prognosis for vision is good. Many children with small eyes will also develop at least moderate vision. If the child is otherwise healthy it is expected that the child will attend mainstream school and read, although often will have difficulty with distance vision for the white board and may need print enlarging.
In most cases the lens will be cloudy enough to prevent clear vision developing and the child will need surgery to have the lens removed. Glasses with thick lenses or contact lenses will be needed for the child to focus after the cloudy natural lens has been removed. The strength of these will need to be regularly changed as the child’s eye grows, unlike an artificial lens placed inside the eye, which cannot be altered. In a few cases in recent years, if the eye is of normal size, a lens implant can be considered. In these cases, the child has to wear glasses of lower power or contact lenses in addition to the implant.
It is most important that children born with cataracts in both eyes have regular eye examinations. In those cases with mild cataract, that does not need a surgical operation, glasses are often needed and the cataract may become denser with time. Children who have had cataract surgery require regular review of their vision development, glasses prescription, a check for glaucoma and examination of their retina.
The most common inheritance pattern is autosomal dominant. However, X-linked and autosomal recessive inheritance of isolated cataract also occurs.
This is not yet available for the majority of isolated congenital cataract.
Childhood Cataract Network
The Network was established in 2007 and offers web based support to adults and parents of children with cataracts. It has a Facebook group called Childhood Cataract Network. Telephone calls are managed by the National Blind Children’s Society. The Network works closely with ophthalmologists at Great Ormond Street Hospital and is in touch with around 200 families.
Group details last updated December 2014.