Raising awareness about Bell’s palsy in pregnancy

March 12, 2014

It’s been three years since Selma was first diagnosed with Bell’s palsy, just a few days before the birth of twins. At the time she was told that the paralysis should clear up in a matter of weeks, however Selma was unfortunately left with permanent facial disfigurement. It has been a very difficult 18-month journey to find the appropriate specialists to give her the treatment she needed.

The build up to having twins is immense, everyone excited about not just one new baby but two new arrivals to the family. Selma explains;

“When it dawned on me that Bell’s palsy wasn’t just a 24-hour thing, the shock started to sink in. My only thought was ‘I can’t give birth looking like THIS’. The anticipation when you’ve got a baby on the way is huge, people are excited and can’t wait to hear the good news, you count down the days, and you want it to be perfect. I never imagined I wouldn’t have that lovely first photo of me beaming with a baby in each arm. If I knew the truth at that point, that my face would never look the same again, I would have fallen into a deep depression.”

The initial treatment for patients with Bell’s palsy is usually steroids and in some cases antiviral medication, after which the patient is normally told to ‘wait and see’ because no one knows how good a recovery any individual will make. Just over 70% of patients make a full recovery from Bell’s palsy and there is usually no routine follow-up care. Long term nerve damage is significantly more likely to occur if the patient was pregnant[1] at the time of onset yet lack of awareness among health professionals means this vulnerable patient group is often neglected.

Bell’s palsy in pregnancy is a particularly difficult time; new mothers are already susceptible to illness such as post-natal depression with the additional stress their bodies have been placed under. The psychological impact of the condition is vastly underestimated.

Selma described her feelings;

“When the twins were a couple of months old, I tried going out for dinner to get a bit of normality but I was so self-conscious. If I could have walked around in a weird phantom mask I would have. The left corner of my mouth was extremely weak and my hand was constantly covering my mouth just in case food randomly fell out, I still do this three years on. I cover my mouth when I’m talking, just because I don’t want anyone to see it. When I try to give a big expression like a loud laugh, my hand immediately reaches up to cover my face. It ruins the moment of whatever you’re finding so funny, you feel as though you’ve lost a part of your soul and you’ll never be able to let go and feel relaxed again.”

Selma had to see three different GPs and visit three different hospitals before she was eventually referred to a multidisciplinary team who specialised in facial palsy.

“My facial therapist gave me a really detailed insight into what I could achieve with the right rehabilitation, she was the first person in 18 months who sat me down with a diagram of the facial nerves and muscles and explained what had actually happened to me.”

Facial Palsy UK is developing a network of mothers who have Bell’s palsy during pregnancy or around the time of giving birth and Selma is actively involved with providing support to other new mums.

“One of the Trustees of Facial Palsy UK put me in touch with other new mums diagnosed with this condition. I have now met ladies in a similar situation to myself and we have become firm friends, we have a bond together that no-one else could understand. Showing support to people at every stage of their palsy means a lot to me, I feel like I’ve been through every emotion and can offer encouragement, or just a sympathetic ear. Meeting all these people, none of it would have happened without the team I am under now. If I had been left to get on with it alone, as I had for the first year, I’d be in a different place right now. There’d be no light at the end of the tunnel, no rehabilitation plan, and none of these fantastic relationships I’ve formed. It bothers me that there are people in other parts of the country that aren’t aware of these facilities; it’s a massive disservice to be without. The only thing I would change for new mums living further out and coping with this problem is that they’d have a facial palsy clinic near to them. But I don’t doubt this will be the case in the future. The only advice I could give a new mum with facial palsy is to contact the charity to find out about the support available, that and ’email me’.”

Bell’s palsy has not just affected Selma but has also had an impact on husband Andrew. Selma explains how it wasn’t easy living with someone who has just had twins and facial palsy on top of that. She says;

“The problem was I felt different from top to bottom, inside and out. And poor Andrew was left to pick up the pieces of at times, a bit of a crazy person. I would never hold it against him if he ever felt Iike snapping his fingers to get the old me back, it was unbelievably stressful.”

Selma explained how Andrew has felt helpless at times and wanted to do something to try and make a difference. When he saw Facial Palsy UK were advertising charity places in the Brighton Marathon he signed up within days. Selma says;

“It was a very proud moment for me when Andrew signed up for the Brighton Marathon. It’s just typical of him really. Andrew’s the kind of man who rarely gets it wrong, he’s an amazing husband and father, and I genuinely wouldn’t function without him. He’s the most thoughtful person I’ve ever met. He’s just special, there’s no other way to describe him. We’re also lucky to have a close network of friends. James, Rob and Jay found out about the Brighton marathon and contacted the charity immediately; there was no discussion, no question. And Dave (an old school friend of Andrew’s) signed up recently too, even though I’ve never actually met him. I’m so honoured that my husband and friends would sacrifice so much to do this. I love them all and will be eternally grateful that they’ve contributed to such an amazing cause.”

Read Selma’s full story here.

Husband Andrew’s JustGiving fundraising page can be found here:

https://www.justgiving.com/Andrew-Abbey

Andrew’s friends’ fundraising pages are here:

http://www.justgiving.com/TeamSpartan2014
http://www.justgiving.com/Jamie-Bloomfield
http://www.justgiving.com/D-SkiltonFacialPalsy

If you would like to find out more about support for women who have Bell’s palsy in pregnancy please visit our support page here.

[1] Gillman GS, Schaitkin BM, May M, Klein SR. Bell’s palsy in pregnancy: a study of recovery outcomes. Otolaryngol Head Neck Surg. 2002;126:26–30.