Victoria’s Story

Victoria’s son was born with an underdeveloped seventh cranial nerve which was misdiagnosed as Bell’s palsy due to birth trauma.
My experience of facial palsy began in August 2014, when my son was born. Before that day, I had only heard of Bell’s palsy. I knew that it could happen during pregnancy and I also believed that it came and went without leaving any lasting effects.

I had a normal pregnancy and labour with no major complications and no interventions. However, soon after my son was born, I was told that he had Bell’s palsy due to birth trauma. He did have a slight bruise on his left eyebrow, and I could see that when he cried his left lower lip went down. We were told by a trainee paediatrician, before we were discharged from hospital, that the Bell’s palsy should go away in a few weeks and an appointment was set up for a review in two weeks. At the review (a different doctor than had seen him in hospital), I was asked “Have you seen any improvement?”. Given that I was a first-time mum, and new-born faces change daily in the early days and weeks, some days I thought I could see a difference in his face and other days I did not. I was hoping that the doctor would be able to tell me if he could see any improvement, but this was not the case. Another appointment was made, and my son was seen by another different doctor at six weeks. And once again, the onus was put on me to tell them whether or not I thought my son’s condition was improving.

One thing, at this early stage in our journey, did not sit right with me. In my son’s red book, the diagnosis he was given was Bell’s palsy, left side. As this was the side of his face that he had the slight trauma to at birth, I didn’t question it. However, I did notice that the right side of his face did not move, whilst his left side did. I asked why at one of his appointments and was told “sometimes the symptoms can manifest themselves on the good side”. Although this didn’t make a lot of sense to me, I accepted that the doctor was the professional and they must know what they were talking about.

Despite several appointments, I wasn’t getting any answers, so I went to my GP and asked could my son be referred to a physio to find out if there was anything I could be doing to help him recover, massages etc. The doctor referred us to a paediatric physiotherapist, and I was told there could be a long waiting list. Over a year later, I contacted the GP surgery only to be told that the referral had been ‘lost’ and we were referred again.

My son finally met with the physio when he was two. She assessed him and admitted that she wasn’t sure of his condition and couldn’t advise us on anything other than a few blowing exercises. We were referred to speech therapy and an appointment was made with a consultant paediatrician, a speech therapist and a nutritionist, at the same clinic. Developmentally, my son was hitting all the milestones and was ahead for his age. Eating was not a problem, and I was told that his speech was perfect. The consultant then asked me a question I will never forget, “Why do you refer to the palsy as being on the left side of his face? It is on his right side”. I felt like the ground had opened and was about to swallow me up. I told her that this is what I was told since he was born, and it was recorded in his red book. I explained the “manifestation on the good side” that another doctor had referred to and she said she had never heard of the like of it. She said she would consult with her colleagues in neurology and within a short time she called to say that my son had been referred for an MRI. This day changed the course of our journey massively and had it not been for that doctor I might still believe the nonsense I had been told up to this point, simply due to a lack of knowledge in the medical profession and also, in my opinion, a severe lack of wanting to be bothered to find it.

I should add at this point that by now I had gone about my own research on my son’s condition and had stumbled upon the Facial Palsy UK charity and the support groups for parents of children with facial palsy on Facebook. I gobbled up as much information as I could on doctors who specialise in facial palsy and also other parents’ experiences. The support, and the feeling that I was not alone, I believe got me through the bad days. Up until this point, I was wondering had I done something wrong in pregnancy or indeed, labour, that had caused this. I felt guilt in not knowing how to help my son and with every day that passed, I wondered if the ‘window of opportunity’ to help him and make a difference to his recovery was running out.

At age two and a half, we headed to hospital for his MRI scan and the results showed that the seventh cranial nerve on the right side of his face was not visible. The right side. Nerve missing or not visible. This doesn’t happen during labour. There is no way of removing it or making it smaller after it has developed, so there is no way this happened due to birth trauma, which might I add, was on the other side of his face. I felt a mixture of emotions. Mostly anger. Anger for the misdiagnosis. Anger for the guilt that had been bestowed upon me for the last two to three years. Anger that it had taken so long to finally find someone who took us seriously and wanted to find answers. Anger that no one knew how to help my boy.

We met with the paediatric neurologist in Belfast. He talked to us about the MRI results and assessed my son. He saw that my son has some movement on the weak side of his face, around his mouth, and he can blink almost fully and explained that although the nerve is not visible in the MRI, it is likely that it is very underdeveloped, rather than missing altogether. I asked about a plastic surgeon in London, whom I had heard of through parents on the Facebook page.  He said that it would be possible to discuss this with the plastic surgeon in Belfast, who he then referred us to, and we met with soon after. He was fantastic. He was the first doctor we had met who assured me that my son’s condition was unlikely to have been caused by anything I had done during pregnancy or labour and that it is just the way he was made. To hear this from a professional might seem like a small thing, as at this stage I had figured it out for myself, but I burst into tears. I felt a huge weight had been lifted off my shoulders and before I had even asked about the London surgeon, he told me that he was referring us to him in London, another sign for me that finally things were going in the right direction.

We flew to see the plastic surgeon who specialises in children with facial palsy in London. I had to get two days off work for this as we had to fly out the day before to avoid travelling through the night and day. Taking my son through the London underground to get to our destination was something I had anxiety about for months before we had to do it. It was the most stressful experience of my life, to date, and I was exhausted after our trip as I was trying to hold it together and make it as ‘fun’ an experience as possible. Thankfully, my son was none the wiser. When we met the doctor, he discussed the two-part surgery and described, in detail, the operations that my son would have to have if that was the decision we made. I was advised that he was the right age for the surgery and told to think about my decision and we would be called back again the following year. I cried the whole way home. The thought of my son going through such major surgeries, not to mention away from home, was terrifying. I had to decide what was right for him, but how would I know without his input? After weeks of going over everything in my head and chatting to people on the Facebook support groups, I decided that it was not the right time for the surgery, mainly because my son has some movement on his palsy side and I did not want to interfere with that unless it was something he wanted for himself, but also because at the time he was a happy and confident little boy who had no major concerns about his appearance and I did not want him to think that I had wanted to change how he looks. I felt the decision needed to involve him and it is possible that in the future it will.

Back home, my son went for his review with the neurologist in Belfast, who referred him to a neurological physiotherapist and speech therapy. I was still clutching at straws trying to find out if there was anything non-surgical that could be done to improve his condition. We met with two lovely physiotherapists, who again admitted that they did not know of any cases like my sons, however they were in contact with specialists at the facial palsy clinic in Oxford and were finding out information and passing it on to us. After a few more consultations with neurology, we were referred to the Oxford clinic for a consultation with the plastic surgeon there. Another trip to England, however this time it felt very different. We had found a specialist who confirmed that my decision to hold back on the surgery, for now, was the right decision and this meant the world to me. We are still under the care of this clinic and are waiting on a review with the plastic surgeon, eye specialist and physiotherapist, however Covid has held this up.

Around the age of three my son did notice his facial differences, asking why he has one eye smaller than the other and why he cannot move his eyebrow, but apart from a short period of awareness he is blissfully unaware of his condition. I have never hidden it from him and have spoken with him about it many times, however he always forgets and asks me again, “What is facial palsy?” He has drops put into his palsy eye every night to keep it lubricated and simple tasks such as brushing teeth or trying to wash his hair without getting soap in his eye are daily challenges that he has to face but thankfully this does not seem to bother him, perhaps as he has never known any different.

My son is seven now and my hope for the future is that he will grow up accepting his facial differences and that he appreciates the effort that I have put in to finding answers for him. I am armed with names of consultants, surgeons, physiotherapists and eye specialists, should he ever want to go down the journey of getting surgery. I now have contacts with parents who also have children with facial palsy and adults who have grown up with it or have developed it in their lifetime. I am so grateful to have found the Facial Palsy charity and their support groups and I will do all that I can to give a little back to them by raising awareness and money for their cause and I hope that when my son is old enough to understand that he too gets involved in supporting the charity. They have done more for him than he will ever know.