At just six months old, Hailey had surgery to remove a haemangioma just below her jaw line. Here her mother tells her story.
Hailey* was born in 2002 she was our first child, her delivery was normal and she was born on time, healthy and happy. I was in awe of my new daughter and for the first five weeks I couldn’t have been happier. Then I noticed the small lump just below her jaw line. Convinced she had mumps we rushed her to the out of hour’s doctor. The doctor assured me it wasn’t mumps but because of her age she wanted us to take her to A & E to be checked by a paediatrician. It was a Friday night in mid – December so you can imagine how A & E looked! We waited an age to see the on-call paediatrician who, on discovering we were first time parents, became instantly dismissive. He told us it was just a cyst and to take her home, it would go in a few weeks.
Well it wasn’t a cyst and it didn’t go in a few weeks, it grew bigger. I visited our GP just before Christmas and she agreed with the paediatrician, telling me not to worry. The lump continued to grow so I returned after the Christmas period, this time we were referred to another paediatrician. On seeing the paediatrician she confirmed that it was not a cyst, it was a haemangioma and we were referred to another specialist. The lump continued to grow rapidly and after an MRI scan at 4 months it was decided that surgery was necessary. At this point I had stopped enjoying going out with my new baby occasionally people would look in the buggy and gasp in horror or ask tactless questions and every time it broke my heart.
They operated when Hailey was 6 months, the surgery took longer than expected and we started to suspect something was wrong. Eventually the surgeon came to tell us that there had been complications. Unfortunately when they opened her up they realised they needed to remove a solid mass not a series of smaller cysts. The surgeon was concerned that he may have bruised a nerve and warned there may be some temporary facial paralysis. Hailey spent the night in intensive care, we were desperate to see her and in no way prepared for what we were about to face. Hailey’s face had indeed dropped and as she turned towards us crying, the full extent of the damage was visible. While the left side showed all the signs of a baby crying, eye screwed up, cheeks puffing, mouth wailing, the right side showed no sign of emotion, her eye did not close and her mouth was drooped and unmoving.
As time went by we realised that Hailey’s paralysis was not temporary, the surgeon hadn’t simply bruised a nerve he had actually severed the 7th nerve (smiling nerve). We felt powerless. Eventually we were referred to a neurologist who in turn referred us to a surgeon that performed facial reanimation surgery. On meeting him he gave us hope that he could bring back Hailey’s smile and told us about a two stage procedure. She was only 18 months and wouldn’t be able to have the first stage of the operation until she was 5, for the first time in nearly a year we saw a better future for our daughter.
Hailey had the first stage when she was 4 ½ years old. Nerve was taken from her calve and grafted to the nerve on the good side of her face. The second operation was performed two years later and muscle was taken from under her arm and attached to the nerve. The operation took over 6 hours and required a 5 day stay in hospital. I stayed with her during this time which meant my younger child had to stay with grandparents. The hospital was in London and we lived in the South West so we were pretty much on our own during that week and couldn’t wait to get home. Hailey missed 5 weeks of schooling and activity was limited on her return (no PE or playing in the playground for a few more weeks) but she recovered quickly. We were told that it would take between 3 months and 2 years to see if the surgery had worked, now all we could do was wait.
Two years later it was clear the surgery hadn’t worked. Hailey was 8, she had multiple scars and the news that she was not getting her smile back had devastating effects. She became extremely withdrawn and conscious of her body with zero confidence. She soon became a target for bullies and children made fun of her face. While it hadn’t really bothered her before, it now seemed so much worse. Hailey’s anxiety increased, she stopped sleeping and was regularly sick at the thought of going into school. She spiralled downwards then one day she apologised to me for how she looked and told me she thought it would have been better if she hadn’t been born. I had developed a tough skin over the years, I had seen how people looked at Hailey. A pre-school photo session had been particularly brutal when the photographer rudely told me to “stop her making that face and get her to smile”. When I heard Hailey’s words my heart broke again.
We were at our lowest point, I sought to get Hailey the help she needed and we were referred to CAMHS (Children and Adolescent Mental Health Services). Using cognitive behavioural therapy Hailey became stronger and better able to deal with facial palsy. We spent two years building Hailey up and she was doing well until our family had to move to the USA. Children can be cruel and in her new school Hailey was faced with a new round of bullying and name calling “armpit mouth and weird” are just a few examples. The worst incident was when a girl, supposedly her ‘best friend’ told her “I can’t be your friend anymore, your face is affecting my popularity”. I had never seen my daughter cry so much or felt so sick in my entire life. Hailey’s anxiety returned, she stopped sleeping again and was regularly sick before school. Hailey has now completed another round of counselling and is again feeling stronger and more confident.
Looking to the future, Hailey has been offered the chance to repeat the second stage of the operation. At first she was adamant she wanted no more surgery, however after the last round of bullying she has decided to give it one more go. As her mum I want to protect her from the world, to stop the cruel words of children and insensitivity of adult’s, but I know I can’t. I think of the importance people place on a smile, about her graduation photo, her wedding photo and all the first impressions she will have to face in her future and my heart breaks over and over. I know that we are on a rollercoaster, right now we are up, although I’m prepared for the downs that may come and will continue to love Hailey more ferociously than ever. I am still in awe of my daughter, she is the bravest, kindest person I know and hopefully the next operation will work, but if it doesn’t I know she’ll pick herself up again and I’ll be right beside her every step of the way.
Facial palsy can be extremely isolating and while friends empathise, they can never truly understand the depth of emotion or effect it has on your life. I have learnt that life can be cruel, children can be mean and adults ignorant. I have also learnt that there is no shame in asking for help and never be afraid to fight for the care you need. Life may never be normal for Hailey, even if she gets her smile back, but thanks to the counselling and therapies available she can learn strategies to help her cope. I see the look of disappointment in her eyes when she looks in the mirror. She may never be comfortable in front of a camera or be the first to give a cheesy smile in a family photo but hopefully over time she will come to accept who she is. I hope one day she will see what I see; big green eyes, gorgeous strawberry blonde hair and a bright quirky smile, my beautiful, courageous daughter.
*Name has been changed for confidentiality reasons
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 22-12-2015 || Next review due: 22-12-2017