Parents of children with congenital heart disease

Medication

Some children needed no medication or only took medicines for a short time after an operation. Others were taking medicines for several months or years. Some were on lifelong warfarin. A few also took medicine because of other problems, such as asthma, immunity problems or epilepsy.

Several parents mentioned that giving medicine to their newborn baby when they first came home from hospital had been a daunting experience but it had soon become routine. Some worked out a strict schedule. One couple recalled that they had once mistakenly given their daughter the wrong medicine. Another couple had designed a chart to record when medicine had been given.

One mother describes some of the ways they overcame problems with medicines and that now her child is 3 she tries not to let medicine take over their daily life. Some mothers whose babies were being fed by naso-gastric tube found medicine easier to give through that.

Most babies of parents we interviewed were given their medicine at the same time as their feeds. Fitting medicine around a baby's feeding time was sometimes difficult if they were on several medicines a day. Many of the mothers we talked to recalled that their baby would be sick after a feed and then they had the dilemma of what to do about the medicine.

Some doses of medicine need to be given during the night. One couple explain how they overcame this problem. Another couple remarked that they still have difficulties giving their 3-year-old son his medicines - they attribute them to having to wake him in the middle of the night as a young baby to give him medicine.

Several parents commented that giving their child medicine had become easier as they got older. One mother said that her 3-year-old son reminds her that his medicine is due and takes the medicine in the syringe himself (see Interview 14). Many parents mixed their child's medicine with a drink or in yoghurt. One mother describes how she tried to make medicine time as much fun as possible.

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A few had suffered side-effects from their medicines. One baby reacted badly to a diuretic, another who was on long-term corticosteroid suffered thrush and reacted violently to some antibiotics. One experienced persistent coughing and had his medicine changed. Another who was on amiodarone was very sensitive to sunlight; which is a common side effect. One mother commented that her baby suffered from constipation, sickness and stomach cramps when taking flecainide.

Some medicines needed to be specially ordered from the chemist, which parents said was a monthly ordeal of making sure that repeat prescriptions were obtained and the medicine was available in time. Some medicines were in tablet form and needed to be crushed to give to the baby.

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Some children need to take anticoagulant such as warfarin for life. This involves going to the clinic for regular blood tests to check that the INR (the length of time it takes for blood to clot), are satisfactory. Children taking warfarin also need to avoid contact sports such as rugby or karate. Horse riding is also potentially dangerous due to the risk of falls. Children need to be careful about injuries or knocks and bumps and if they have extensive bruising or they appear drowsy after a head injury you should seek medical advice immediately. Teachers and other carers need to know what to look out for and if bleeding does not stop quickly they should be taken to hospital. Diet can interfere with anticoagulant such as warfarin and cranberry juice and changes in the amount eaten of green leafy vegetables rich in vitamin K should be avoided. Other things that can interfere with warfarin are general ill health, diarrhoea and vomiting and other medicines such as antibiotics.

One mother whose son is 7 explains that apart from not being able to take part in contact sports, her son can take part fully in school life. Another mother of a 3-year-old boy mentioned that she just has to be extra careful with cuts and bumps but generally she did not worry about him being on warfarin.

On occasion, parents recalled that their child's INR had gone out of the satisfactory range and the dosage had to be changed and more regular blood tests taken at the hospital. One mother who lives on one of the UK islands had a home testing machine, which she said had enabled them to be a lot more mobile.

Last reviewed March 2015.

Last updated March 2015.

 

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