After the Baby is Born

Many health care providers should be involved in the care of an infant who has A/M and his/her family. They are needed to help the baby and the family meet challenges related to A/M and to live as healthy a life as possible.

A newborn with A/M should be examined immediately by an Ophthalmologist (a physician who specializes in problems related to eyes), and an Ocularist. If an eye is missing or is too small, the face cannot grow properly. Rapid growth of the face occurs in the newborn and young child, so care should not be delayed. An Oculoplastic surgeon will often be a part of the baby’s care team and will perform necessary surgical procedures.

A Geneticist (a physician who is an expert in genetic conditions) and a Genetic Counselor (a medical professional who specializes in support and information sharing) will help the family to coordinate special care and early intervention for the child. The genetics team will also discuss the possibility of having another child affected with A/M in the future. They will also offer ongoing support. Genetic tests may help to make a diagnosis, but a normal chromosome test does not rule out a genetic cause for A/M. The normal chromosome test means only that the cause is unknown at that time. The geneticist should see the child again at a future date, when new information may help to make a diagnosis. New gene screening research tests are available through ican and the A/M Registry.

Vision helps infants to learn and to develop. Children who are blind in one or both eyes need special interventions to help them in a sighted world. Early intervention services, including Orientation and Mobility (O&M) training should be an essential part of the care of an infant who has A/M. As they learn about the care of their infant, parents and family members also need to learn about available services and to receive the kind of support that will help them in parenting a child with special needs.