Who is an Ocularist?

An Ocularist is a health professional who specializes in prosthetic devices for the eye. This specialty combines an understanding of color and artistry with expertise in the science of the development and function of the face and eye.

Why should treatment begin so soon after the baby’s birth?

Growth and development of the face is usually dependent upon the presence of an average-sized eye within the orbit. Facial development occurs very rapidly in an infant and young child. Doctors believe that about 90% of orbital growth is complete by 5 years of age. If the orbit is empty, it will not grow properly. In turn, the child’s face will not grow properly and this may lead to changes in the child’s facial appearance. Thus, it is important that therapy begin very soon after birth.

What will happen at the first visit with the Ocularist?

Your first visit will begin as a conversation between you and the Ocularist about your baby’s medical history. The Ocularist will next observe the baby for a short while. He will then examine the baby’s face and eye socket, using only his hands to separate the eyelids. During this examination, the Ocularist will explain what he is doing at all times.

Therapy often begins at the first session. The Ocularist may decide to use one of two basic approaches toward treatment. The most common approach involves the insertion of a premade conformer, which helps to support the growth of the eye socket and the bones of the face. The conformer is used to expand the orbit and the opening of the eyelid. A conformer is a tiny plastic device, which looks like a ball with a stem. This stem makes it easier to remove the conformer when removal is necessary. The premade conformer is selected to fit the general size and shape of the baby’s orbits. A different approach uses a soft wax material to fashion a custom-molded conformer, which is shaped exactly like the baby’s orbit.

In certain cases, the Ocularist will perform a special examination under general anesthesia in an operating room. At this time, the Ocularist would take impressions of the eye sockets in order to create custom-made prosthetic devices. The Ocularist will determine which of these approaches is best for the baby’s individual needs.

How will the baby react to the Ocularist?

The baby will need to be held still during the Ocularist’s examination and the fitting of the conformers. During the examination, the Ocularist will touch the baby’s face and head and will separate the baby’s eyelids. Although anophthalmic sockets are not usually sources of great pain, the examination may still be disturbing to newborns who cannot understand what is happening. The baby can be expected to cry and resist the examination, even with the gentlest approach.

Can a prosthetic device help the baby to see?

No. Prosthetic devices are very important because they help the baby’s face to grow and develop. However, with the present state of science, no devices are available which will allow children who have anophthalmia to see.

Are conformers uncomfortable for the baby to wear?

Although it will take time for the baby to get used to wearing conformers, they should not cause pain for the baby. If the eye appears red, weepy, or the baby indicates pain by frequently rubbing or pulling at the eye, contact your Ocularist immediately. Do not remove the conformer without the knowledge of your Ocularist or physician.

What if the baby removes the conformer?

Older infants and toddlers may remove their prostheses/ conformer as part of personal exploration and play. To replace the conformer, use the techniques the Ocularist will teach. If you are unable to reinsert the conformer, contact the Ocularist without delay. The socket will begin to shrink if the conformer is not in place.

Will the Ocularist give the baby a prosthetic “eye” at the first visit?

No. Many anophthalmic babies will require treatment with a conformer to prepare the orbit before a “permanent” prosthesis, which resembles an eye, can be used.

Which questions should be asked during a visit with the Ocularist?

At the conclusion of your visit, you should have the following information:

  • When to return
  • What the baby’s treatment plan will be
  • How to care for the prosthetic devices at home
  • How the baby should be expected to react to the prosthesis
  • How to make the baby’s acceptance of the prosthesis easier
  • Signs of complications
  • Who to call with questions or problems
  • What costs will be involved

You will probably add many other personal questions to this list. Do not be afraid to ask questions of your health care providers. They are available for help. In the case of anophthalmia treatment, knowledge can be very helpful. Try to identify and write down your questions and bring them to your visits.

Will the baby have to return to the Ocularist?

Yes. Anophthalmia is a condition which requires visits to the Ocularist throughout life. During the baby’s first year of life, many ocular devices will be needed as the baby grows and as changes take place within the socket. The baby may need weekly, bi-weekly, or monthly visits to the Ocularist for the first year. As the baby gets older, fewer visits are needed. The actual number of visits will depend upon the baby’s individual needs.

Who pays for treatment by the Ocularist?

Many commercial insurance policies, HMO insurance policies, and medical assistance plans pay for both the visit to the Ocularist and the conformers. The insurance company may request a letter from the baby’s eye doctor and Ocularist, which explains the baby’s individual needs. You should discuss payment concerns with the Ocularist’s billing manager at the time when the appointment is made.

Will the baby have to see an eye doctor as well as an Ocularist?

Yes. The eye doctor will also prescribe care for the baby. The ophthalmologist and the Ocularist will consult with each other to create the complete plan, which will provide the best care for the baby. This plan will allow the Ocularist to develop the prosthetic devices which best meet the baby’s needs.

What long-term results should be expected?

Eye prostheses and appropriate surgeries are expected to enhance the child’s appearance. As each child is different, the actual results of these procedures will vary. Even though the child may look somewhat different from sighted children, people with ocular prostheses can look terrific!

Are the prostheses and therapy programs the same for all children with anophthalmia?

Not necessarily. Each child with anophthalmia has uniquely formed sockets, eyelids, and facial structure. Therapy is uniquely designed to meet each child’s special needs. While it is helpful to draw upon the experiences of others, it is also important to realize that each child’s therapy and outcome will probably be different.

Do children do well with ocular prostheses?

Most children learn to do very well with their prostheses. Time, patience, and a sense of humor are needed to help the children to adjust to the prostheses. During infancy, a responsible adult is needed to care for the eye prostheses. As the child grows, he can learn to take very good care of his own prostheses. Eye prostheses can become one routine aspect of successful daily living for people with anophthalmia.

Will a person who feels “squeamish” about eyes be able to handle the treatments?

Yes. Over time and through necessity, everyone can learn to care for the baby’s eye prostheses and needs. Concerns and feelings should be discussed with the baby’s Ocularist, who is used to dealing with concerns about these very important topics.

Is it normal to feel worried about the first visit to the Ocularist?

Yes. Most people have had no experience with anophthalmia or the specialty that deals with ocular devices. It is important to share these concerns with the Ocularist. The international children’s anophthalmia network (ican) is a support group for family members and friends of persons with anophthalmia. This group of healthcare professionals and family members of children with anophthalmia can be contacted for support, information, or education through their hotline at 1-800-580-ican (4226) or their Internet Web Page at www.ioi.com/ican.