Parents of children with congenital heart disease

A child's development

Some children with congenital heart disease, in and out of hospital for their first few years of life for various operations, may have development problems. Delays may occur in growth, language development and motor skills (sitting, crawling, walking). Some children with a heart condition, for example 22q11, Di George Syndrome have other health problems which can cause developmental delay.

Many of the parents of nursery or school age children however said there were no signs of developmental delay. One mother whose daughter had three operations by the time she was two and a half, stresses that it had not affected her development. She can do all the things other children her age can do. Another couple said their toddler had passed all her milestones.

Some children were late reaching their development milestones. One mother, who was very worried about her son's late development when he was a baby, said that he was now a normal seven-year-old and doing well at school. Another said her 2-year-old son's development had been delayed during the first year when he was in and out of hospital, but that since going to nursery he was catching up (see Interview 05).

Some children showing delay require special help. One three-year-old, who had started walking when he was one but was not yet speaking, attended a special needs nursery. Another three-year-old boy was having speech therapy.

One couple describe how they arranged various forms of support, including a physiotherapist, a play therapist and regular visits to a paediatrician, to help and monitor the development of their 15-month-old daughter who had had a stroke.

Some CHD babies are much smaller than other children of their age. One mother whose son has bradycardia, and was always small as a toddler commented that now, at the age of seven, he was one of the tallest in the class. Not all CHD babies are small. One couple said their five-year-old daughter wears clothes for 8 to 9-year-olds.

Sometimes nurseries or schools hesitate to take responsibility for a child with CHD. One mother said the nursery was at first reluctant to take her son when he had not yet had treatment, but she had visited them, sent them a letter from the consultant and had given them written notes about her son's condition. They agreed a contract where they only paid for the days that her son was at nursery because he was often off sick.

Another mother decided not to tell the playgroup about her child's heart defect because she didn't want her to be treated any differently. Many had found that the nursery or play group were happy to take their child.

Parents commented that their children got on very well at nursery. Although some mothers had been anxious, their children thoroughly enjoyed it and they had made good progress (see Interview 05). One mother said her son could join in most games but would stop if he was tired and seemed to know his own limitations. Having a pacemaker had not restricted one four-year-old girl at nursery.

One mother who chose to return to work after nine months, before her son had any treatment, mentioned that she is very glad she did. Her son loves the nursery and being with other children. One mother explains that it took a bit of time to build up her son's confidence to be at nursery without her, but now he is happy to be left there and he enjoys it.

Another said that although nursery opens her daughter up to more infections she seems very robust and not too badly affected by them. One child's nursery had a policy of not administering medicines so her mother had asked the doctor to change her child's medication to twice daily to fit in with this.

One mum whose child went to nursery with an NG tube and needed to go to bed in the afternoon, said both the nursery and the school had been very accommodating and that the other children were very accepting. She describes how he got on.

Children get on well at school. Parents had made the school aware of their child's health problems. Some parents were concerned their child would be tired and not able to join in. But generally this was not the case. The mother of an 8-year-old boy with hypertrophic cardiomyopathy said about school sports and PE, that it was very hard to limit his exercise if he was feeling OK (see 'How it affects daily life' and 'Coping').

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Last reviewed July 2018.


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