A newborn with anophthalmia/microphthalmia will need to be seen by an ophthalmologist, ocularist and usuallys an oculoplastic surgeon. An ocularist is a health professional who specializes in prosthetic devices for the eye.
The orbits (eye sockets) are very important for proper growth and development of the face. If an eye is missing or too small, the bones around the eye may not grow properly. A conformer is a plastic shell-like device made by the ocularist that can be placed inside the orbit to help support the growth of the eye socket and the bones in the face. As the child grows, and the orbits and facial bones develop, the ocularist can also make prosthetic (artificial) eyes. Since each child is different, the age when the child is ready for a prosthetic eye varies. The ocularist works closely with the ophthalmologist and oculoplastic surgeon to make conformers and prosthetic eyes that are best for the child. Sometimes surgery may be recommended to implant a prosthetic device deep into the orbit in order to make it easier to fit the prosthetic eye. There are various surgical options available when the conformers are not enough alone.
There is no treatment that can reverse microphthalmia. It should be monitored according to the complexity of the eye involvement. If a cataract(s) is present that is causing reduced vision then an operation to remove it may be performed. There s some increased risk of detached retina in eyes that are microphthalmic. Visits to the ophthalmologist will probably be more frequent during the early years to monitor for treatable conditions that might develop, but will depend on the individual needs. The child may need to be followed up periodically when the condition is seen to be stable and there are no other complications. If the eye is small or badly malformed, then an artificial eye or lens (sometimes called a scleral shell or prosthesis) can be fitted for cosmetic reasons and/or for promoting socket growth.
In infants, a prosthesis or conformer generally must be enlarged every few months to expand the socket. This is necessary to stimulate the socket tissues and bony orbit to grow at a normal rate. In the case of a congenitally small orbit, the socket and lid opening is actually smaller than the companion eye. Because of this difference in size, a series of conformers are necessary to stretch the tissues and form a socket into which prosthetic eye can later be fit. The conformer is usually enlarged once a month or as necessary to increase orbital volume as circumstances allow.
As the child grows the prosthesis will need to be checked regularly for size, comfort and fit (usually 2-3 times a year). It also needs to be polished and checked for any damage such as scratches or sharp edges.
When a child’s eyes are fully developed, usually by the preteen years, the prosthesis will generally remain the same shape and size for a longer period of time. However, it is necessary to enlarge the artificial eye periodically or fabricate a new prosthesis from time to time. Depending on he child’s age, this will need to be done every 3-5 years.
If the microphthalmia is unilateral and causing reduced vision in that eye, then the ophthalmologist should prescribe protective glasses with polycarbonate lenses to protect the better eye from injury.
- In children the prosthesis needs to be checked regularly for size, comfort and fit
- Baby shampoo or mild soap can be used to clean the prosthesis
- Never use rubbing alcohol to clean or sterilize the prosthesis as it will damage it
Anophthalmia/Microphthalmia can result in the child being blind or partially sighted. Children who have a visual impairment in both eyes due to a congenital condition may sometimes have other problems, such as learning difficulties or behavior problems. Occasionally there are more severe problems or disorders. This is because the brain forms at the same time as the eyes, which are really an extension of the brain rather than separate organs.
We now know that the first few years of a child’s development are the most important. Partially-sighted or blind infants and toddlers can experience delays in some areas of their development. Early Intervention programs provide educational support and information to families that have a young child with impaired vision or other disabilities. Children with unilateral (one-eye) A/M also require services even if they show no signs of delay. Specifically Orientation & Mobility training (O&M). This service helps compensate for the lack of peripheral vision. Often, one must specifically ask for and fight for this service. Parent-infant specialists will, with the parent’s approval, draft a plan for development goals that need to be worked on with the child, based upon what he or she needs. All of your child’s specialists/therapists will work together with the family. Some programs are center-based, meaning that the specialists may work directly with the parent and child at a program center. Some are home-based, where the specialist comes to the home to introduce educational toys and activities to the family in the privacy of their own home. Participation in an Early Intervention Program helps to maximize a child’s development and helps them reach their full potential. Most states have Early Intervention services that are available to children under the age of three years.
Early childhood programs are available for preschool children between the ages of 3-5 years. To find out how to access an Early Intervention Program (birth to three years) or an Early Childhood program (3-5 years), contact the State Board of Education and ask for the program you are interested in through the Department of Special Education.
Parents of blind and partially-sighted children are naturally concerned about the type and quality of education available to their child. U.S. Public Law 94-142 mandates free and appropriate education for all children identified as having a disability. It also states that the education is to take place in the least restrictive environment, meaning that every effort will be made to accommodate the individual child’s needs within a regular classroom setting.
In addition, the law ensures an impartial due process hearing for parents who are not satisfied that a free and appropriate education is being provided for their child. In other words, parents have the right to voice their concerns if they disagree with professionals about the educational placement of their child.
U.S. Public Law 94-142 mandates free and appropriate education for all children identified as having a disability.
For questions or assistance contact Adele Schneider, MD, Clinical Geneticist (Genetics Division, Albert Einstein Medical Center, Philadelphia). She can help provide guidance for appropriate services and treatment and make referrals to specialists in your city or town.