Campaign for better NHS care and awareness for women who experience Bell’s palsy in pregnancy

April 25, 2019

6 weeks post partum

6 weeks post partum

Pregnant women are at a higher risk of developing Bell’s palsy (the most common form of facial paralysis) than people who are not pregnant. Most cases of Bell’s palsy in pregnancy occur during the third trimester or within seven days of delivery. Those affected are often discharged with very little advice and struggle to access follow-up specialist health care when they are at their most vulnerable. According to our recent survey*, over half of people with facial palsy experience anxiety and/or depression as a direct result of the condition.There are up to 21 different physical issues.

“Taping your eye shut at night and then having to untape and retape for the numerous night feeds was difficult. My vision was constantly blurry in the affected eye. One time I nearly fell down the stairs while holding my baby, due to problems with my vision.” Amanda

“I often feel sad that my children only know my ‘new’ face and not my ‘old face’. This is the part that I have struggled with the most, I don’t particularly care what strangers think, in my job I am meeting new people every day and getting on with it, but I just wish my children could see my smile.” Samantha.

Selma with the twins

“I never imagined I wouldn’t have that lovely first photo of me beaming with a baby in each arm. It took another 18 months before someone actually explained what had happened to me.” Selma.

Bell’s palsy is the most common cause of facial paralysis with an estimated incidence of 11-40 persons per 100,000. In the UK there is a one in 60 lifetime risk of developing it. Research states a frequency of Bell’s palsy in pregnant women at 45.1 per 100,000 births per year, compared to a non-pregnant incidence of 17.4 for the same age group.

How can you help?

Act now by signing our UK government petition asking for greater awareness of the impact of facial palsy. Share and retweet. #SaveMumsSmile.

What are the symptoms of Bell’s palsy?

  • Sudden onset (within hours) of symptoms
  • The symptoms peak within 1-3 days
  • No previous history of trauma, surgery or localised infection
  • May have felt unwell in the days before the paralysis was observed
  • May have noticed sounds seem louder, taste has changed and the eye is dry
  • Difficulty raising the brow, blinking and closing the eye
  • Watery eye
  • Difficulty smiling and pouting the lips
  • Food and drink falling/dribbling from the mouth
  • Change in speech and facial appearance

Whilst it is always important to have these symptoms checked out by a medical practitioner, there are no current NICE (National Institute for Health and Care Excellence) guidelines for diagnosis, starting treatment and monitoring of the mother and foetus when a pregnant patient also has Bell’s palsy.

How can facial palsy affect new parents?

Expectations of parents, family and friends are high when a new baby is arriving and most parents anticipate sharing this amazing experience, including lots of photographs. The pose of parents and baby is probably one of the most photographed events of a life time. Facial Palsy UK always recommends having plenty of photographs taken as you cannot get these moments back. When the shock of being diagnosed with Bell’s palsy has worn off, the person with Bell’s palsy may regret not having photographs taken at the time. But it’s important for the person with Bell’s palsy to have control over use of the photographs, including on social media.

As Bell’s palsy involves facial paralysis it will prevent the mother from expressing emotion in the way she usually does, whether smiling or crying.

What support is available for parents?

This is a difficult time mixed with great happiness but also anxiety, especially when events don’t go according to plan. It is a time when those concerned need high quality advice, information, support and encouragement. It is a time when they may feel vulnerable and least able to help themselves. Fortunately help is at hand:

Facial Palsy UK Bell’s in Pregnancy Support Network – this is a network of people who have not made a full recovery. If you are newly diagnosed bear in mind there will be many people who have made a full recovery who have had no need to contact the charity and are therefore not part of this network.

Facial Palsy UK Facial Palsy in Pregnancy Support Network Facebook group – this group is open to people who had facial palsy in pregnancy or just after giving birth, and their partners. Some people in the group have made a full recovery.

Can you help raise awareness of facial palsy?

To many people who develop facial palsy, whether Bell’s palsy or other forms of facial paralysis, such as Ramsay Hunt Syndrome, lack of awareness of the condition adds unnecessary concern to them and their loved ones. Please sign and share the petition. It is a quick and easy way to help spread awareness and highlight the needs of this patient group. #SaveMumsSmile

https://petition.parliament.uk/petitions/242864

With grateful thanks to Mumsnet who will be featuring our guest campaign on their website.

*2019 survey of 421 people affected by facial palsy in the UK

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