- Reference Number: HEY1154/2023
- Departments: Ophthalmology Department
- Last Updated: 31 December 2023
Introduction
This leaflet has been produced to give you general information. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you and the healthcare team, but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.
What is Marcus Gunn (Jaw-winking) Syndrome?
Marcus Gunn Syndrome is a condition which develops before birth. Individuals with the condition will have a droopy eye lid (ptosis) as shown by the picture on the left. The lid can be seen to lift or flutter when the jaw is moved, particularly side to side as shown by the picture on the right. It is often noticed when a baby is feeding, but can also be seen when chewing, clenching teeth or swallowing. Of those children seen with a droopy lid, Marcus Gunn (Jaw winking) syndrome is the cause in 5% of cases. The condition usually only affects one eye and can be more noticeable when a child is looking down.
What is the cause of Marcus Gunn (Jaw-winking) Syndrome?
Marcus Gunn is thought to occur due to an abnormal connection of a branch of the nerve that helps move the jaw (the trigeminal nerve) to the upper eyelid. It is not known why these abnormal connections develop. As a result of these abnormal connections the eyelid and jaw at times move simultaneously.
Can this impact vision and why do I need to attend appointments?
In the majority of cases the droopy lid (ptosis) does not affect visual development directly. Children are not born with fully developed vision; in the same way they learn to speak they have to learn to see. If there is a barrier to normal visual development, such as a droopy lid this can lead to a lazy eye (amblyopia).
In children it is advisable to attend orthoptic appointments so that your orthoptist can ensure that the vision is continuing to develop normally in both eyes.
Can there be any associated complications or risks?
There may be an associated focussing difference between the eyes (anisometropia), and/or a squint (strabismus). Consequently there may be a risk of developing a lazy eye (amblyopia) – this can be identified and treated by your orthoptist. In some cases there may be a reduction in the ability of the affected eye to move upwards.
How can I help if my child has Marcus Gunn (jaw-winking) Syndrome?
It may be helpful to share the information in this leaflet with your family and friends, as well as your child’s school. No specific action is required, except from attending routine follow up assessments with your local eye clinic when suggested.
Treatment is not usually required. The condition tends to become less noticeable as the child gets older. If there is a significant drooping of the eyelid then surgery may be considered by your Ophthalmologist (eye doctor).
People with Marcus Gunn may learn which jaw movements make their eyelid move as they become older, and some people may be able to adjust their jaw movements to limit the movement of the lid at certain times.
Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Orthoptic Department on tel: 01482 816605.
General Advice and Consent
Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.
Consent to treatment
Before any doctor, nurse or therapist examines or treats your child, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to your child. You should always ask them more questions if you do not understand or if you want more information.
The information you receive should be about your child’s condition, the alternatives available for your child, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:
- you must be able to give your consent
- you must be given enough information to enable you to make a decision
- you must be acting under your own free will and not under the strong influence of another person
Information about your child
We collect and use your child’s information to provide your child with care and treatment. As part of your child’s care, information about your child will be shared between members of a healthcare team, some of whom you may not meet. Your child’s information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.
We may pass on relevant information to other health organisations that provide your child with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your child’s doctor, or the person caring for your child.
Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about your child. For further information visit the following page: Confidential Information about You.
If you need information about your child’s (or a child you care for) health and wellbeing and their care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.
