Lisa’s Story

All I want is my smile

I had a normal pregnancy and three weeks before my due date I went into labour with my son, Jamie. We got into a bit of difficulty and the doctors had to use forceps and suction. Everything seemed normal after that. We didn’t really notice anything different. He sucked a dummy on one side and we just thought of him as a wee Popeye and that was just him. As he grew, he was late coming off the dummy. I mentioned this to his teacher in nursery about his face because of the dummy and she said it was fine. It was whenever he went into P1, his teacher who had Bell’s Palsy, noticed something different. She asked me had I noticed anything about his face. I told her we thought it was because of the way he sucked the dummy. She said we would be better off getting it checked out.

We were referred to the paediatrician in the local hospital and she requested that he got an MRI scan after asking what kind of birth I had. He had to get an anaesthetic for this and that was really hard. They couldn’t see anything from the MRI, but they could tell from the way Jamie spoke and smiled that there was something.  He was referred to someone with some experience of facial palsy, a plastic surgeon at another hospital in Belfast. He had a wee look at him and another look at the MRI results and he told us that the nerves and muscles in Jamie’s face were damaged, possibly caused by the forceps during labour. After this consultation he referred us to a children’s hospital in London, to the specialist facial palsy plastic surgeon there. The doctors in Belfast hadn’t enough knowledge and experience of a case like Jamie’s.

About eight months later we went to London and met the plastic surgeon there. He explained things and he knew by just looking at Jamie. He said yes there is damage there and what he could do is perform two operations, the first one was to take a nerve from his leg and put it in his face, let it grow for a year and then the second would be to add muscle in from his neck and under his arm. This would give Jamie some movement on his palsy side to match the other side of his face and give him more symmetry. He said it was a 60/40 chance of success and it was our choice on what we decided to do.

I can see the effects on Jamie. He won’t talk to anyone. He doesn’t like going into school. He won’t smile. If he smiles, he’s covering his mouth. He is even starting to wipe his mouth when he is talking because he is dribbling a lot now. He won’t play with other children as he is afraid of them making fun of him. It’s very hard for Jamie to mix as he won’t go to any sports or anything. I tried to get him into swimming with his wee cousin, but he won’t go if she’s not there. It has affected his mental health so much. I had to ask the school photographer not to ask him to smile because he is so conscious about smiling. He always says, “I want my smile”. He will look at himself in the mirror and make faces. He notices the differences on that side of his face, that his eye doesn’t close, and his nostril looks smaller. I would find pictures in my phone of him opening his mouth and doing different poses. He said to me before, “Why isn’t that eye closing? It doesn’t blink”. I asked him to blink and I told him it does blink but he said he doesn’t feel it. He doesn’t feel every action. Jamie often asks things like, “Why am I weird? People will make fun of me, mummy. Why am I like this and nobody else is like this?”, so we could see that we had to do something for him. I want him to go out with his friends and make friends in school. He says he has no friends and he has started asking for a puppy so it can be his friend. It’s horrible to see him like that and I don’t want to leave it too late in life for him and have him asking me why I didn’t do anything. I also see how he is now and think he will get a lot worse. We made the decision to have the surgery.

Jamie has been attending sessions with a psychologist since he was referred to her by his paediatrician. She is absolutely brilliant. She even rang Jamie’s school and explained to her what to say to the kids. She sent her a wee booklet and a game to help explain to the kids how people are different. The teacher did this and the psychologist still keeps in contact with the school. We are also having Jamie assessed for autism. He has a lot going on and I don’t know how much of it is due to the facial palsy or the possibility that he has autism. Thankfully, kids have never commented on Jamie’s appearance and sometimes, when he forgets about it and he feels comfortable playing with his brother, he lets his guard down. At home with us he’s a different child. He’s constantly talking, and he Facetimes his cousin. I think he feels more comfortable with Facetime because he doesn’t feel like anyone is looking at him.

About eight months after his referral, Jamie went to London for the first surgery. He is seven now and he had the first part of the surgery when he was just turned six. The first operation was okay because he didn’t know what he was going in to but after it he was very sick, and he wouldn’t eat for three days. We stayed overnight in the hospital accommodation the night before the operation as we had to be in the hospital for 7 o’clock in the morning. We stayed in London for five days in total. We can see the scar is starting to knit in quite nicely and it will only be a small line.

Just before Jamie came back to school after the operation the teacher had spoken to the other kids and prepared them for the fact that Jamie would come back with a scar on his face. She reassured them that he was okay as a lot of them were worried about him. She told them not to talk about the scar, so it didn’t make him sad and all but one of them managed to stick to this plan. I think this shows you that when kids understand and are made aware of something, they do actually take it in and understand. The teachers are all aware of Jamie’s situation and they will be looking out for him, but I worry about him in the playground when they won’t always be around. This is something I want to prepare him for, how to deal with difficult situations and comments and how to react. I also need to prepare myself.

We are waiting on the second surgery in a few weeks. The next one will be a bigger one. It’s going to be eight hours long and he will be off school for 12 weeks. The education authority has agreed to bring someone in to do home schooling. I just keep saying to myself that we are doing it for his good and he is better off getting the surgery now because it is going to be harder for him if he has it done later in life. The psychologist has been in discussion with the psychologist and the doctors in the children’s hospital in London to find out what ways she can prepare him for the next surgery. She is absolutely amazing. She is now seeing us through Zoom every two weeks, which works well as Jamie feels a bit more comfortable over Zoom rather than face to face. At the moment it’s very hard because he won’t even go to play in his cousin’s house. He is very clingy to me and I think lockdown has been tough on him as it has almost set him back again.

I’m worried about Jamie’s future, like any parent would be. All I want is for him to have confidence and be able to make friends. I hope that we are making the right decision for him in going for the surgery and I am hoping that the second stage is a success. We don’t know if it will work or not and at his age he won’t understand if it doesn’t. He will be wondering why he did it and it hasn’t worked, and he will be asking me where his smile is. He said that after the first operation, “I thought you said my face would work”, and we had to explain to him that it was just the prep for the next stage. I really hope that it works, and it improves his mental health when he finally gets his smile.

Lisa, mother of Jamie, age 7.