What is an external fixator?
An external fixator is a metal bar or frame that is attached to your child’s bones using pins during an operation under general anaesthetic.
It is used to either stretch soft tissues (skin and muscle) or lengthen bone. Different types of distractor are used for different conditions.
Are there any alternatives?
The options for treatment depend to a great extent on the problem with your child’s arm and hand, and what potential benefit external fixation will bring. The process of distracting your child’s wrist, arm or digits is lengthy and demands commitment from you and your child, so is not suitable for everyone.
Children with upper limb problems adapt quickly and may not require treatment at this stage. External fixation does not have to happen when your child is young, so he or she can decide at a later date whether to go ahead with the procedure. However, we may advise treatment at a younger age for some conditions.
We will invite you and your child to attend a preparation clinic appointment at Great Ormond Street Hospital (GOSH) before you make any decisions about distraction. The purpose of this appointment is to meet the clinical nurse specialist, clinical psychologist and occupational therapist. They will give you some practical information about the process of having an external fixator, the length of time it could be in place for and the daily care that will be needed.
You will see pictures of children before, during and after the procedure, and discuss how the hand and arm will look and function. The clinical psychologist can discuss expectations of and preparation for surgery, offer help with decison making and cover any aspect of the procedure that you and/or your child find worrying.
Parents often ask to be put in touch with another family who have been through the procedure already and we can help you with this if required.
After the appointment, you and your child can decide whether or not you want to go ahead with the procedure. If you do want to proceed, we will arrange an appointment with the surgeon. Equally, if you prefer to wait or have further questions, we can also arrange another appointment.
We will ask you and your child to come to GOSH for a pre-operative assessment before the operation is planned. You will be able to discuss your child’s planned operation with the team before coming in to hospital for your admission.
Your child will also have various tests and investigations carried out during this appointment. This avoids any delays on the day of the operation. During the appointment, you will meet the consultant surgeon who will carry out the operation and the clinical nurse specialists who will teach you how to look after the external fixator.
The surgeon will explain about the operation in more detail, discuss any worries you may have and ask you to sign a consent form giving permission for your child to have the operation. Another doctor will check that your child is fit for surgery. If your child has any medical problems, particularly allergies, please tell the doctors about these. Please also bring in any medicines your child is currently taking.
One of the team will explain about the types of anaesthesia that are used at the hospital, and also about options for pain relief after the operation. If there any questions or concerns about your child’s anaesthesia, an anaesthetist may come to see your child in the pre-admission clinic. All children are seen by the anaesthetist on the day of the operation.
The appointment is also useful if your child is apprehensive about any aspect of the procedure, our play specialists can help prepare your child, as can other members of the team. We can also start to make plans for after the operation, for instance, if you need any equipment or supplies, these can be arranged beforehand.
What does the operation involve?
Your child will be given a general anaesthetic for the operation, which can last around two hours. The surgeon will attach the fixator using pins to your child’s arm and hand bones using small incisions. If the bone is to be lengthened, during the operation, it is cut in between the two sets of pins so that the fixator can be gradually lengthened and the bone ends drawn apart.
Are there any risks?
As with all surgery, there is a risk of bleeding but the surgeon uses a tourniquet to reduce blood flow to the operation site, so there is rarely any serious blood loss.
There is also a small risk of infection as the skin is opened, but your child will be given antibiotics to reduce this risk. If an infection does occur, it is usually minor and easily treated with a course of antibiotics, but as there are pins in the bone any signs of infection need to be acted upon promptly.
The amount of scarring varies from child to child. If your child tends to scar easily from cuts and grazes, it is likely that he or she will have noticeable scars after the operation, but these will fade in time.
Sometimes the bone does not hold the metalwork as well as we would like, as the bones are still forming and the pins can move within the bone, pull out of the bone or fracture the bone. This may require another operation to reposition the fixator and occasionally this will prevent further distraction.
What happens after the operation?
After the operation, your child will recover from the anaesthetic in the recovery room. When your child is more awake, he or she will be moved back to the ward. Your child’s arm and hand will be a bit uncomfortable for the first few days, so we will make sure that he or she has enough pain relief.
Pin site cleaning
The day after the operation, the nurses will start to clean the pin sites (where the pins enter the skin). This can be uncomfortable at first but will become easier with time. They will show you how to do this and there is also a reminder in your parent held record.
Either on the same day or the day after, the nurses will start to ‘distract’ or stretch the fixator. This is the process by which the cut ends of the bone are separated and gradually pulled apart or the soft tissues are stretched. This is done using a small tool and again, there is a reminder in your parent held record.
Distraction can feel uncomfortable for your child. We usually suggest a stronger painkiller, such as morphine, for the first distraction, but after this, you can give paracetamol and/or ibuprofen according to the instructions on the bottle before each distraction session. If you feel that your child is finding distraction very uncomfortable, please let us know so that we can arrange stronger pain relief.
The occupational therapist will visit your child to explain the exercises needed to keep the muscles in the arm strong. Your child’s movement will be limited by the fixator but certain exercises will still be possible.
Three to four days after the operation, once your child is recovering well and you are confident in looking after the pin sites and carrying out distraction, you will be able to return home.
Potential problems with the external fixator
The most common problems are pin site infections and pain. These are explained below, and it is a good idea to know about them and what to do if they occur.
Pin site infections are common, despite rigorous cleaning, because the wounds give a direct entry point to germs. If infections are not treated in time, the distraction process may need to be stopped, and the infection could spread to the bone (osteomyelitis). If you notice any signs of infection, explained in the next section, please contact us immediately.
Your child may feel pain as their arm or fingers straighten and lengthen due to the nerves and veins stretching. You should watch out for signs of this happening, like your child complaining of tingling, pins and needles, or reduced blood supply to the hand which can make it cold. Some children say that their fingers feel stiff.
If these things happen, you should inform the team and we may slow down or stop the distraction process. Regular pain relief should be enough to deal with any pain, but alternatives are available if this is not sufficient.
Looking after the fixator at home
You will need to carry out pin site cleaning once or twice a day, depending on how crusty they are. If you notice any signs of infection, for instance, pain, redness, oozing or the skin around the fixator feeling hotter than surrounding skin, please contact us. You may have to clean the pin sites more frequently or your child may need to have further antibiotics.
You will also need to distract the fixator once or twice a day, as instructed. It is important that you record how many turns you do in your parent held record, as this will help us judge how long your child needs to keep the fixator in place.
While distraction is taking place, you and your child will need to visit GOSH once a week for a progress review. We will check that the pin sites are clean and not infected and that distraction is happening at the planned pace. We may ask for X-rays to be taken at these reviews.
Once the distraction phase has finished, the fixator needs to remain in place for several more weeks while the bone grows stronger or to maintain stretch. You will need to come to GOSH for a review appointment once every two to three weeks during this phase of treatment. These appointments allow us to check the pin sites and may involve x-rays and other tests.
Managing at home
We advise that your child keeps the affected arm and hand dry for the period of distraction. He or she can have a bath or shower, but the arm or hand should be covered with a plastic bag or a plaster cast protector. These will stop splashes of water causing any problems but will not protect the arm or hand if it is put under the water. If it does get wet, remove all the dressings as quickly as possible, clean the area and apply new dressings.
Your child will be able to wear normal clothing over the external fixator, but big baggy tops are easier to get on and off, as are shirts or tops that button up the front. It is possible to wear t-shirts but it will be easier to get them over the external fixator if they are a size or two larger than usual. Short sleeves are also easier to wear than long sleeved tops. Tops can be made easier to wear by splitting the inside arm seam and using poppers or ties to fasten. In general, avoid fiddly clothes containing zips, buttons or fasteners, as your child’s movement in the affected hand will be limited while the fixator is in place.
Your child’s activities will be limited to a degree while the external fixator is in place. We suggest avoiding messy play, for instance, with sand, paint or mud, as this could lead to a pin site infection. Sports and swimming are not advisable either, owing to the increased risk of infection or damage to your child’s arm. Generally, your child will be better doing quiet activities such as reading or playing computer games.
You and your child will be visiting GOSH weekly during distraction so holidays will probably not be possible. Once distraction has stopped, you will need to have review appointments every two to three weeks so you will be able to take a short holiday. We tend to advise families to holiday in the UK where possible, so that any complications can be dealt with quickly. Please talk to us about your plans before you make any bookings.
We recommend that children carry on attending school or nursery during the distraction process. If staff have any questions, they can discuss them with the clinical nurse specialists.
Before your child returns to school or nursery, it can be helpful to explain to teachers and classmates about the fixator. It can be painful and potentially harmful if the fixator is knocked, so your child may need extra time to get to classes avoiding crowded corridors for instance.
We also advise staying indoors during breaktimes to avoid any rough and tumble play.
Your child could also require some help with tasks such as carrying school bags but most schools can provide help as and when needed. As mentioned previously, we do not advise taking part in sport while the external fixator is in place.
Removing the external fixator
During regular review appointments, your child will have X-rays taken to check how the straightening and lengthening process is working. When the best result has been achieved and the bone has strengthened or the stretch maintained, it will be time to remove the fixator. It may involve a procedure to hold the correction in place or bone grafts to fill in any gaps. This varies from child to child so the clinical nurse specialists will explain this nearer the time.
Your child’s arm and hand is likely to be covered with a bandage or a plaster cast once the fixator has been removed. Once your child has recovered from the operation, he or she will need hand therapy to build up the muscles in the arm and hand and restore movement. Hand therapy will continue for some time, until as full a range of movement as possible has been achieved. Splinting may be suggested to protect and position the arm.
Your child will have some scars where the pins were inserted, but these should fade over time. The longer scar from the final procedure will fade. Our clinical nurse specialists will explain how to care for the scar so that it fades well. You should massage a bland moisturising cream, such as Nivea® or E45®, into the scar as instructed. Your child should avoid exposing the arm to sun for a year or so afterwards as this could cause the scars to redden and darken.
For the first year or so after the fixator has been removed, your child’s arm may be weaker than the other one and more likely to fracture. We will advise you when your child can return to full activity. If your child does fracture his or her arm or hand, please ask your local hospital to contact us before setting it in plaster, as we may need to send x-rays or advice to them.