When your child needs a pacemaker or defibrillator

Transcription

1 When your child needs a pacemaker or defibrillator Your child has been found to have an abnormal heart rate or rhythm disturbance. Having a pacemaker or defibrillator implant fitted can treat this. This leaflet will help answer some of the questions you might have about your child having a pacemaker or defibrillator fitted. If you have any further questions, please speak to a doctor or nurse caring for your child. Why does my child need a pacemaker? The rate that your heart pumps blood around your body is controlled by electrical signals, produced by your heart s natural pacemaker, called the sino-atrial (SA) node. The SA node is made up of cells in the right atrium (upper heart chamber), and sends out electrical impulses or signals. These signals are conducted to the pumping chambers (ventricles) via the atrio-ventricular (AV) node, which acts as a controller. Damage to this structure is often the reason when someone needs an artificial pacemaker. Your child s heartbeat is too slow or irregular. This may be because your child: was born with a defective SA or AV node is taking medication to prevent a fast heartbeat, which is causing the SA or AV node to work too slowly had an illness that damaged the SA or AV node or had heart surgery that damaged the SA or AV node. Your child may feel breathless or tired because of the slow heartbeat, but some children will have a pacemaker fitted even if there are no symptoms, to prevent future complications. Why does my child need a defibrillator? Your child s heartbeat may become too fast at times, or there is a risk that a fast heartbeat will develop. Without the presence of an implanted defibrillator this may lead to a cardiac arrest ( when the heart stops pumping blood around the body), needing resuscitation to start it again. What is a pacemaker? An artificial pacemaker is a metal box about the size of a matchbox, weighing 12 to 50 grams ( ounces), which is buried under the skin or muscle of the chest (or occasionally the abdomen). It contains batteries and electronic circuitry. Attached to it are one or more electrode leads, which carry electrical impulses from the pacemaker to your child s heart to regulate its beat. When the leads pass from the metal box through the veins to reach the heart, this is called an endocardial pacemaker. 1 of 9

2 In some cases, the surgeon needs to open the chest (either from the front or the left side) to suture (stitch) the pacemaker s electrode leads directly on to the heart (this is called an epicardial pacemaker). The pacemaker is programmed to a certain number of beats per minute. If your child s heart rate falls below that number (if the interval between two beats is longer than it should be) an electrical impulse is sent from the battery along a wire to the heart to make it contract and produce a beat. What is a defibrillator? A defibrillator contains a pacemaker, but can also deliver a shock to the heart for fast heart rates that can be dangerous. It is larger than a pacemaker (typically twice the size and weight) and is implanted in a very similar way to an ordinary pacemaker. One of the leads has a coil on it to deliver the shock, as well as being able to pace the heart. What are the benefits of a pacemaker or defibrillator? A pacemaker can sense if your child s heart rate is too slow. If this happens, it adjusts your child s heart rate to prevent symptoms or a dangerously slow heart rhythm developing. Some children whose heartbeat is too fast will need medicine as well as the pacemaker to keep their heart beating at the correct rate. A defibrillator will sense if the heart beat is too fast and can then deliver a shock to correct it and prevent a cardiac arrest. Additional medication is almost always required. Are there any alternatives? Medication can sometimes be used in some conditions, instead of a pacemaker or defibrillator, but this is generally not as effective. How should I prepare my child for the procedure? Preparing your child for the procedure will help them to understand their treatment better. Children from a young age are often keen to talk about what they know about hospitals. Talking to your child in advance will give them time to talk about any questions or concerns. Children tend to be more co-operative when they understand what is happening to them. What to say: Give truthful, factual information, eg Your heart is not beating as well as it should. Use familiar words to your child, such as ouch, pain, sore or hurt. Explain the reason for going into hospital: The doctors want to give you a pacemaker to help your heart beat better. Explain the tests your child may have. Explain that they will have an anaesthetic A medicine to prevent you from feeling any pain during the operation. Let your child know that they will meet the doctors and nurses before the procedure. Explain they may have some discomfort but not pain when they wake up, where the lead was inserted (in the left shoulder) and around the wound where the pacemaker has been implanted (left side of the chest). 2 of 9

3 What happens before the procedure? You and your child will come to the ward the day before the procedure. This is so we can do the necessary tests to prepare your child, such as a chest X-ray, an ECG (electrocardiogram, which checks the heart s rhythm), blood tests and an echocardiogram (ultrasound of the heart). We will also need to put a cannula (fine tube) into a vein in your child s arm, so any necessary medicines and fluids can be given. Your child should not have anything to eat or drink for six hours before the procedure. Your child s nurse may offer a small drink of water two hours before the procedure. We will talk to you and your child about this when you come into hospital. What happens during a pacemaker or defibrillator implantation? Most procedures take place in the cardiac catheter laboratory at Evelina London Children s Hospital. This is a small operating theatre set up specifically for procedures such as implanting pacemakers. Some procedures will be performed in the main cardiac theatres at St Thomas Hospital. Your child will probably be given a general anaesthetic, which means they will be asleep during the entire procedure. For more information about general anaesthetic, please ask for a copy of our leaflet Having an anaesthetic. You can be with your child until they have the anaesthetic and are asleep. You can then see your child again when they have recovered and are awake. You cannot watch the procedure. Only doctors, nurses and technicians are allowed into the room, to help us prevent any infections. After the anaesthetic is given, the skin below the collarbone is cleaned. The cardiologist makes a small, three-to-five centimetre cut under the collar bone (near the shoulder) to reach a vein and to make a pocket for the pacemaker. An electrode lead is inserted into the vein and, under X-ray, is correctly positioned in the heart and secured into place with either tiny fins or a little screw at the tip of the lead. Your child may have either a single-chamber pacemaker (with one lead) or a dual-chamber pacemaker (with two leads). The choice depends on the size of your child and the reason for the pacemaker. Sometimes three leads may be required, but this is rare. The electrode lead is connected to the pacemaker box, and then fitted into the small pocket under the skin or muscle of the chest. The cut is closed with dissolvable stitches that will not need to be removed. When a defibrillator is implanted a test shock is also delivered to the heart to confirm that the device is working well. For very small children, or when a large pacemaker or defibrillator is needed, the pocket may be made under the skin and muscle of the abdomen (tummy). Sometimes it is not possible to use the veins to insert the pacemaker or defibrillator and a cardiac surgeon will need to implant the pacemaker or defibrillator. This is a bigger procedure 3 of 9

4 and the chest will need to be opened to expose the heart. The surgeon will stitch the leads of the pacemaker or defibrillator directly to the outside surface of the heart. The pacemaker or defibrillator is attached and placed in a pocket under the skin or muscle in the abdomen (tummy). This is called an epicardial pacemaker or defibrillator. Every case varies, but generally a pacemaker or defibrillator implantation takes between one and two hours. Your child may be away from the ward for two to four hours in total. The X-rays below show a) a single chamber pacemaker (with one lead) in a three-week old baby; b) a dual-chamber pacemaker (with two leads) in a young child; c) a defibrillator in a young child; and d) a defibrillator in an older child. What happens after the procedure? Your child will be taken to the recovery area after the procedure. You will be able to join your child there. We will then take your child back to their bed on the ward. The nurses will visit your child and check the wound dressing regularly. Antibiotics Your child will be given antibiotics through a vein for 24 hours after the procedure. You may also be given antibiotics for your child to take by mouth for five to seven days after you go home. 4 of 9

5 Restricted arm movement It is very important that your child does not make large movements of the arm on the side that the pacemaker was inserted for about three weeks after the procedure. Your nurse will explain this more. X-ray The day after the procedure, your child will have an X-ray to make sure the pacemaker or defibrillator leads are in the right place. This will be done in a different part of the hospital. You can go with your child to the X-ray department. Pacemaker or defibrillator box check A special reader connected to a computer is placed over the pacemaker or defibrillator ( box ) to read and/or change the settings and check the battery. This will be done before you go home. You will be given a pacemaker or defibrillator card at this time, which contains important information and should be taken to all clinic appointments and on holidays. Wound dressings The nurses will remove the dressing from the wound site and will leave the steri-strips (paper stitches) in place. These will fall off over the coming week. It is important that your child does not scratch or pick at the wound as this may lead to it becoming infected. They should also keep the area dry until the paper stitches have come off (usually one week). Your child may feel sore around the pacemaker or defibrillator site. The nurse can give your child paracetamol (calpol) to relieve this. When can my child go home? Your child will be able to go home one or two days after the procedure if there are no complications in their recovery. When can my child resume their normal activities? Your doctor will talk to you before you go home about when your child can return to their normal activities. Your child should be able to return to school within a few days. Energetic activities, such as gymnastics and jumping on a trampoline, and forceful arm movements on the side of the body where the pacemaker or defibrillator was implanted, should be avoided for three weeks. This is to help prevent the leads from moving. After three weeks, the leads should be firmly held in place by body tissue and most activities can be resumed. However, full contact sports such as rugby, boxing and karate should be avoided as long as your child has a pacemaker or defibrillator. There are no diet restrictions your child can eat and drink as normal at home. Will you be able to see the pacemaker or defibrillator? The visibility of the pacemaker or defibrillator varies. Usually in younger or smaller children, you might be able to see a raised area or bump where the pacemaker or defibrillator is sitting securely under the skin. But in older or larger children the pacemaker or defibrillator can be completely invisible. It also depends on where exactly the pacemaker or defibrillator is inserted. Your surgeon or the nurses looking after you will be able to tell you and your child more about what it may look like. 5 of 9

6 Are there any risks with the procedure? There are risks associated with any procedure. Your cardiologist (specialist heart doctor) will discuss the risks with you in more detail before asking you to sign a consent form. Please feel free to discuss all your questions and concerns with them. You should have received the leaflet, Consent to treatment for your Child: Important information for parents/carers about giving permission for your child s treatment, which gives you more information. If you have not, please ask us for one. The risks associated with a pacemaker or defibrillator insertion are very low, but may be increased if the condition of your child s heart or general health is poor. There is an overall risk of 1 or 2 people in 100 experiencing complications, which include the following: Blood loss. Blood loss during pacemaker or defibrillator insertion is usually small and the blood does not need to be replaced. Rarely, the amount of blood lost can mean a blood transfusion is needed. Pneumothorax (air leak around the lungs). The blood vessels that the leads are inserted into are near to the lung. It is possible that a small puncture will be made in the lung when the leads are inserted, causing an air leak. This can heal by itself, or a chest drain may need to be inserted, to remove the air and allow the lung to fully inflate again. Lead displacement. In the first few weeks after the procedure, there is a risk that the leads will move. If this does happen, the pacemaker or defibrillator will not work properly and another operation will be needed to reposition the wires. In small children, an extra loop of lead is left in the heart so that the lead stays in place as they grow. Haematoma (severe bruising). Your child may have bruising or swelling around the site where the pacemaker or defibrillator is implanted. This should disappear within a few weeks of their operation. If it becomes very large it may need to be drained (this is very rare). Infection. Your child will be given antibiotics before and after the procedure to reduce the risk of infection. If your child develops signs of an infection after leaving hospital, such as redness, oozing and inflammation around the insertion site, or a fever, you should contact the hospital immediately. Vein thrombosis (clotting). The veins used to carry the leads to the heart may narrow or clot, causing some swelling of the arm. This usually settles in a few days. In some cases, the vein blocks off completely without any symptoms. A blocked vein may make it difficult to place new electrode leads in the future. Pericardial effusion (blood leak around the heart). It is possible to damage the heart wall when the leads are positioned in the heart (extremely rare). If this happens, the sac surrounding the heart (pericardium) may fill with blood. This may heal by itself, or your child may need a small drain inserted to remove the blood. In very rare cases they may need another operation. Use of X-rays. X-ray scanning is used to guide placement of the leads. Although all X-rays are potentially harmful, only a very low dose is used. Death. As with any procedure, there is also a risk of death. This is extremely rare, but it is important for you to be aware of this. We will talk about this with you when we discuss consent for the procedure. 6 of 9

7 Will microwaves, mobile phones, magnets and airport security affect the pacemaker or defibrillator? Modern pacemakers or defibrillators are protected from outside interference from most everyday electrical and electronic items. However, some precautions include: Magnetic resonance imaging (MRI) scanning is not allowed for people with normal pacemakers or defibrillators. A new MRI pacemaker and leads that allow MRI scans are now available. You will be informed if your child is able to receive this type of pacemaker. The pacemaker or defibrillator will set off airport alarm detectors. Your child should show their pacemaker or defibrillator card and walk around the detector. Antitheft detectors, such as those at supermarkets and libraries, can interfere with the pacemaker or defibrillator if your child stands inside them. It is best to walk through briskly. Mobile phones should not be placed over the pacemaker or defibrillator site. It is best to use the phone in the opposite hand. Magnets placed over the pacemaker or defibrillator site will change the settings until removed. This is not dangerous, but may be uncomfortable and should be avoided. A magnet is routinely used for pacemaker or defibrillator checks, but this will be with a doctor or technician. A leaflet for teachers and other carers about these precautions is available. Please ask us for a copy if you do not have one. How long will the pacemaker last? Modern pacemakers can be expected to last for about four to five years if implanted in the first year of life. In older children, they would be expected to last seven to eight years. This is only a guide. The length of time for the pacemaker battery to drain depends on the pacemaker settings chosen and how much the pacemaker is used. If only the pacemaker needs changing, this is a quicker procedure and your child may be discharged the same day. Defibrillators usually last between five to six years. Occasionally the wires will require replacing. This is more complicated and your doctor will discuss this with you if necessary. How is the pacemaker or defibrillator monitored? The pacemaker or defibrillator settings and battery are checked regularly after implantation. Six weeks after the procedure, you will be asked to bring your child back to the hospital to check the pacemaker or defibrillator. At this time, the settings are often changed to reduce the drain on the battery and increase the battery life. Your child will need to come to the hospital every six to 12 months so we can monitor the pacemaker or defibrillator and their health. When we see some early signs of the pacemaker s battery starting to run down, checks will increase to every three to six months until it is decided to change the battery. You will be sent appointment letters to inform you of these appointments. 7 of 9

8 Will my child feel any pain? For a few days, your child may complain of some discomfort around the site where the pacemaker was inserted. This is usual and paracetamol (eg Calpol ), taken as instructed, can help. If they still have pain then some ibuprofen may also be given. If your child s pain is difficult to control, please contact your GP or the hospital ( ). Any medication given to you will be explained before you leave the hospital. If you are at all uncertain, please contact the hospital or your GP for advice. It is important that you do not exceed the recommended daily dose of any medication you are given. Please make sure you read the label. Who can I contact if there is a problem at home? If your child gets a direct blow to the pacemaker or complains of being very tired, then please contact your doctor or nurse at the Evelina London Children s Hospital on If you have any questions or concerns, please contact the nurses on Savannah Ward on our 24-hour emergency telephone number How can I find out more information about a pacemaker or defibrillator implantation? You may wish to contact the following organisations: Children s Heart Federation Information on a variety of issues for parents or carers. t: w: The Somerville Foundation Support and advice for adults and teenagers (12 years of age and older) born with congenital heart defects. t: e: pline@thesf.org.uk w: Evelina Children s Heart Organisation (ECHO) For parents and families of children with cardiac disorders who are treated at Evelina London Children s Hospital. ECHO provides contact networks, regular newsletters, social events and website/online support. For free membership, t: w: HeartLine A voluntary organisation offering support and help for children with heart conditions and their families. t: w: 8 of 9

9 Evelina London Children s Hospital Your child will be having his or her pacemaker insertion at Evelina London Children s Hospital, which is based at the St Thomas Hospital site on Lambeth Palace Road. One of the many features of the hospital that make it a warm and friendly environment for children is that each floor of the hospital is named after a part of the natural world from Ocean and Beach through to Savannah and Sky. Your child will be having his or her pacemaker insertion on the 4th Floor of Evelina London Children s Hospital, an area that we call Savannah. For more information on how to get to the hospital, how to visit or contact your child, and what to bring, please visit the website at Useful sources of information Evelina London Medicines Helpline If you have any questions or concerns about your child s medicines, please speak to the staff caring for them or contact our helpline. t: am to 5pm, Monday to Friday e: letstalkmedicines@gstt.nhs.uk Patient Advice and Liaison Service (PALS) To make comments or raise concerns about the Trust s services, please contact PALS. Ask a member of staff to direct you to the PALS office or: e: at St Thomas t: at Guy s e: pals@gstt.nhs.uk Knowledge & Information Centre (KIC) For more information about health conditions, support groups and local services, or to search the internet and send s, please visit the KIC on the Ground Floor, North Wing, St Thomas Hospital. t: Language support services If you need an interpreter or information about your care in a different language or format, please get in touch using the following contact details. t: fax: NHS Direct Offers health information and advice from specially trained nurses over the phone 24 hours a day. t: w: NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: 9 of 9 Leaflet number: 272/VER3 Date published: May 2015 Review date: May Guy s and St Thomas NHS Foundation Trust