Parents & Siblings

Parents of children with facial palsy

Facial palsy is a rare condition, even more so when it occurs at birth or during childhood. Because of its rare nature, and the fact that it sometimes takes a while to confirm an exact cause or diagnosis, it can be an extremely worrying time for parents who are often unsure of whether this is a permanent or temporary condition. You can find more information here about children and facial palsy:

• Young children with facial palsy
• Teenagers with facial palsy
• Young adults with facial palsy

The overriding emotion that appears to felt by mothers of children born with facial palsy is one of guilt. Many question themselves as to whether they did something wrong during pregnancy or could have prevented this in some way. This is a very normal feeling.

‘I was born with facial palsy but I also have a child who was born with a physical disfigurement which has required several surgeries. The guilt I feel as a mother, worrying whether perhaps I did something to cause my son’s problems, is far worse than how I feel about my own facial palsy. Knowing that I have somehow accepted my face the way it is helps reassure me that my son will also accept his differences. It’s helped give me some perspective.’

Parents of children with facial palsy report the following concerns:

• Difficulty in coping with their child’s feelings about facial palsy.
• A tendency to blame themselves for what has happened.
• Worrying about how to talk about facial palsy with their child, without sounding patronising.
• Being unsure of how to deal with other people’s questions about their child’s face.
• Lack of information about facial palsy and not knowing how to access specialist medical help.
• Struggling to reassure their child they do not look as bad as they perceive themselves. Trying to help a child with facial palsy gain some perspective is difficult. Adults know that people stare for all kinds of reasons, it may be nothing to do with facial palsy, but it is hard to convince children of this.
• Worries that their child may be bullied.
• Sadness when their child gets older and becomes more self-conscious, watching them trying to hide their facial palsy by not smiling or laughing so much.
• Where birth trauma is the cause of facial palsy, the baby’s delivery may well have been rushed or traumatic in some way. Some mothers report feelings of confusion, feeling rushed through consent procedures and not being fully prepared for the fact that things can go wrong. It is therefore important that mothers are fully supported by health professionals when a baby is born with facial palsy, and that the condition is discussed sensitively, taking great care not to let the mother feel it is in some way her fault.

‘Of course I asked myself if I had caused this in any way. You do feel very lonely not knowing other parents who have been through this.’

‘It is only recently since doing our own research and speaking to other people in an online support group that I have found out there are other options which could help my daughter with Bell’s palsy. The relief from finding this out is amazing…’

Support available

Our main support groups cater for people over the age of 18, or 16 and over if accompanied by an appropriate adult. We don’t recommend bringing children to adult support group meetings because some of the discussions may be inappropriate, e.g. discussions about surgery may frighten a young child.

• Family Days – a day for children with facial palsy, their parents and siblings.
• Facial Palsy UK Parents & Carers Facebook Group (also see Facebook group guidelines)
• Befriending – we can often put people in contact with other families affected by facial palsy so do send us an email if you would like to find out more. Please contact us on support@facialpalsy.org.uk.

Siblings

When there is a child with facial palsy in the family, this may or may not have an effect on siblings. Young children are generally very accepting of people, often more so than adults. Some siblings will not even realise there is something different about their brother or sister’s face and it may come as a surprise to them when people ask questions.

Most parents make an effort to ensure life is as normal as possible, so that the child with facial palsy feels no different to their brothers or sisters. However, a sibling of a child with facial palsy may experience the following:

• Protectiveness for their brother or sister with facial palsy.
• Other people making unkind comments about their brother or sister’s face.
• Jealousy if more attention is paid to their sibling.
• Resentment – if there are lots of hospital appointments which they also have to attend, or which take their parents away from home.
• Confusion – if they don’t understand facial palsy and any related problems.

Most of the above are normal feelings that all siblings can have, regardless of facial palsy. However, it is important to be honest and open with siblings about facial palsy, so they learn the correct facts from their parents and do not make their own assumptions, or believe incorrect information they may hear from others.

Meeting a facial palsy specialist soon? For more information on what you might experience when meeting a facial palsy specialist read our blog about the facial palsy clinic at Alder Hey.