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Life with a Single Functioning Ventricle Disorder When you are first told that your baby has a heart problem it is very difficult to know what sort of life your child will lead. This section of the booklet hopes to answer some of the most commonly asked questions about life at home. It is extremely important to remember that each child is different and that not all of the information below will necessarily apply to your child so please use this information as a guide, consulting with your child’s cardiac team for further information. Appearance Children with heart disease look very normal. They may have a slightly blue tinge around the lips and fingernails (cyanosed). This is because they have a reduced amount of oxygen flowing around their bodies. After the final operation when the blue (deoxygenated) blood and the red (oxygenated) blood have been separated, they should be pink. Development If the children have recovered well after surgery they will usually develop normally. They will be able to crawl, walk and run within the normal development time spans of other children. They should go on to attend normal school and be able to succeed in reading, writing and mathematics as other children do, although some do require extra educational support. Socially, they will be able to develop normal friendships and be part of normal family life. Diet and growth Children with heart disease need more calories than other children. Their hearts need more energy to function so they need to take in extra calories if they want to grow. During the first few months of life especially, the child will need regular weight checks to ensure that their food balance is correct. If they are not gaining weight then more calories will have to be added to their milk. If they are tiring easily whilst feeding ( see section on Heart Failure), it may be necessary to rest them temporarily by feeding them down a tube that has been passed into their stomach. For many babies it is normal to need some sort of help to gain weight. The hospital dietician and the community health visitor will be available for information and support. Activity Children with Complex Single Ventricle Disorders can walk and run. They should be able to ride a bicycle and play football in the back garden, but they will not be able to play a full game of football or run in a competitive race, as they will tire easily. Contact sports are not possible because of the surgical scarring and anti-coagulation treatment. Long Term Treatment If the surgery has been successful the children should not need to spend a great deal of time in hospital. They will need to have regular outpatient checkups to monitor their progress, with the occasional hospital admission for tests. Most children are on some of the drugs described in the section on Commonly Used Drugs, but these are given at home and the children become used to having them. |
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Little Hearts Matter is a registered charity in the UK, No. 1123290. - ICRA Registered Site Map Link To Us Legal By using this website (www.lhm.org.uk) you agree to all appropriate conditions found on our legal page. Site maintained and developed by World Launch IT Ltd, part of Londonlaunch Ltd and World Launch Group Ltd.
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