I'm writing this post so that if any other parent finds themselves in the same position hopefully they will feel more enlightened, and not so frightened.
The halo looks like some piece of Victorian torture apparatus, but it really isn't that bad. It's not pleasant but in all honestly you do get used to it, both parents and the wearer.
Some of the things I thought about the evening before it was fitted.
What about her hair?
Lucy has long hair, I had no idea if they would shave any of it. I had no idea how I would be able to manage her hair once in the halo. I considered cutting her hair short. I really had no clue.
Well, generally, they do not shave children to fit a halo. The halo does not go all the way around the head, so if the child has long hair it can be brushed and styled from the back. For the actual fitting it is probably best to leave the hair down. I made the mistake of plaiting Lucy's hair and the screws were inserted through the plait causing it to be tangled. I'm so glad I didn't cut her hair, she didn't want me to and it would have been just one more thing for her to be upset about.
With boys, things should be a lot easier. Short hair would be really easy to manage.
Washing the hair is a problem mainly because you can't get the vest wet. I've seen some photo's of people lying down on a counter while their hair was washed by someone else in a sink or bowl.
I chose to wash Lucy's hair in the bath. I made sure the vest was covered completely by plastic bin liners and also managed to cover her shoulders with a hairdressers cape threaded through the bars of the halo. I washed her hair quickly to avoid her getting too wet, or the water seeping through the covers.
What about her clothes?
The halo comes with a large, fleece lined plastic vest. There are bars and screws to consider. The shoulders and neck are hard to reach making dressing difficult. The vest does not cover the upper body completely, there are gaps at the sides. Also, it does not go right down over the waist so there will be a gap between the vest and the trousers or skirt.
I found that vests with spaghetti straps worked best. The thin straps were able to fit on the small space left on the shoulders. I had to buy them a couple of sized too big as the vest is quite bulky. We put them on from the bottom up. being stretchy was helpful too. I made sure the vests were long enough to cover her tummy.
Over the vest I found that blouses worked best. I guess shirts would work for boys. You won't be able to do them up to the neck so there will still be a gap. They will also need to be a couple of sizes too big.
When going out in the cold we found the only way to cover her neck was by threading a scarf through the bars of the halo. This shouldn't be a problem in warmer weather.
Can You go Out?
For the first couple of weeks we didn't really take Lucy out. If we did we used a car. Once She was more comfortable with the halo we were able to venture out on public transport.
A child wearing a halo has limited visability because they cannot move their neck. They are also top heavy and it takes some time for them to gain their balance.
You shouldn't really go out if it's freezing cold as the pins can become very cold and they are in the skull. You should also avoid rain as it's difficult to keep the halo dry.
How Will They Sleep?
The simple answer is, just how they have always done...unless they sleep on their front. With Lucy it took her a couple of nights to get used to the halo then she was fine. She likes to sleep on her side and this is possible with the halo. The head doesn't touch the pillow, it is suspended. It doesn't look comfortable but it can't be too bad. Lying on the back is better because the halo doesn't go all the way around and you can actually lie on the pillow. Even though the head is mostly not touching the pillow, it's still good to have a nice soft one.
We found that for at least a couple of weeks Lucy couldn't turn herself over in the night, so if she became uncomfortable we had to go and turn her. Then she just started to be able to do it by herself, and get out of bed by herself.
The halo makes the child top heavy so it does take some getting used to but it's not impossible. I guess all children will be different and a younger child may have even more trouble mvoing around after lying down.
Can They Go To School?
We were told by the consultant at the hospital that it would be okay for Lucy to go back to school with the halo in place. I didn't really feel comfortable with this and decided to discuss it with her school. They were not too keen on having her there, they were worried she may fall or be pushed. So we arranged for her to be sent some work to do at home. However, as the weeks progressed we decided the better option would be to apply for a home tutor. We have a very good school near us that provided home tutors for sick children and children who are otherwise unable to attend school for a period of time. This is what worked best for us.
Does the Halo Hurt?
I've left this one until last because it is relative to the child. Lucy has a very high pain threshold and had little trouble with the halo. When it was first applied she was very distressed and had headaches for a few days. There were also a few times while wearing it that the points (the parts where the halo is screwed into the flesh and skull) were sore or hurt. However, she became comfortable very quickly and complained little. Another child might feel very differently. You have to remember that the the halo is heavy, uncomfortable and is screwed in. Also, the vest can be quite uncomfortable to wear and the skin underneath can become sore.
Lucy was very lucky, she had no infections at the points (which can happen) and no sore skin under the vest.
There is one thing that is difficult to prepare for and that is how you will feel when you first see your child in the halo. I felt very distressed and a little nauseous. Lucy was also very distressed so I had to push my own feelings aside and not let on just how awful I felt.
You really do get used to it pretty quickly though, it's not all bad.
Lucy stayed in hospital for five days after the halo was fitted. Before she came home she had to show that she could walk around the ward, walk up and down the stairs and I had to learn how to clean the points.
I hope this has helped a little if you have found yourself here because your child is going to need a halo. If you have any questions please ask in the comments or contact me.