What causes coloboma? Can it be passed on to my child's children, or could our next child be born with it?
Many of the things that can cause coloboma are still unknown. Many people are told their coloboma is a fluke, meaning the doctors don't know what caused it. There are many known birth defects that can cause coloboma, and a few of them are hereditary (run in families). There are some known environmental causes also. The only way to get an answer to this question is to see a genetic counselor
How can I help my visually impaired child succeed in life? What groups, or agencies can help me? What services are available?
In the USA and in most other countries there are (Early Intervention Programs) for children born with vision impairments. Contact your town�s school system to find out about these programs. You will also want to join an organization for parents of vision impaired children like the
(National Association for Parents of Children with Visual Impairments).
Are their any medical treatments for coloboma?
With the exception of eyelid coloboma, there are no medical treatments for coloboma. It is possible to surgically stitch up an iris coloboma, but most doctors will tell you that the risk of vision loss from the surgery out weights the cosmetic benefit.
Are there ways of hiding an iris coloboma?
An Ocularist, the same person who makes prosthetic eyes, can make a painted contact lens to cover an iris coloboma.
Since some children born with coloboma can have other birth defects what else should be checked?
Doctors usually run tests to check for heart, kidney and urinary tract problems; an MRI of the head and eyes is also run.
What type of eye doctor should we be seeing?
A child born with coloboma should be seen by a pediatric ophthalmologist (children�s eye doctor). The best place to find a doctor who has experience with coloboma is at a medical school hospital, or eye hospital. There is a list of eye hospitals and medical schools in our group's Files section in the folder called
(Doctors).
What are the basic questions to ask my child's eye doctor?
There is a printout called, (Eye Exam Check List), in our group's Files section. It's in the folder called
(Doctors).
How can I tell how well my child can see?
An eye doctor who has experience with coloboma should be able to give you a rough idea of your child's visual acuity after his first examination. This will become more accurate as your child reaches school age and can read the eye chart.
If your child has central retina damage, or a large visual field loss, a teacher of the vision impaired will be able to measure your child's (functional visual acuity). This test will tell how well your child has learned to use what vision he has to work with. This test is important for making educational/life decisions like if your child will need: extra help in school, Large Print, Braille, a white cane, etc.
Where can I get more detailed information about coloboma?
There is a large amount of information about coloboma, and links to other sites, in our group's FILES, POLLS and LINKS sections.
(left side of our group's home page)
How can I get in contact, or meet with other people who have
coloboma?
Our group provides a way for people who have coloboma to interact with each others from around the world. We also have sub group's for children-teens, parents, and adults who have coloboma. A few of our members have met off list. This is the reason members are asked to tell others what state or country they are from.
Where can I read about other's experiences with coloboma?
There is a folder called (Life Stages) in our group's
(Files Section) It is packed full of life stories from other members.
Is there a medical study going on help find the causes and potential treatments for coloboma and how can I get involved?
A research program is being run at the National Eye Institute.
Contact info -
Brian P. Brooks, M.D., Ph.D.
National Eye Institute & National Human
Genome Research Institute
National Institutes of Health
Bldg 10, Rm 10N226, MSC 1860
Bethesda, MD, 20892
Phone: 301-496-3577
Fax: 301-402-1214
(Their Web Site)