Parents of children with congenital heart disease

Parent's reactions to their child's diagnosis of congenital heart disease

Nothing can prepare a parent for the shock of discovering that there is something wrong with their unborn baby or child's heart. All parents want healthy, perfect children and to be told that something as fundamental as the heart is damaged can be devastating. When parents we interviewed were first told about their child's diagnosis, they said it seemed like the end of the world and everything looked very bleak.

Parents who were looking forward to the birth of their baby suddenly had their joy of impending parenthood turned upside down. The excitement of planning for the birth of their baby disappeared and was replaced with fear and anxiety, though one mother who had felt devastated when given the diagnosis said she became more positive and hopeful as her pregnancy progressed. 

Several mothers found it difficult to bond with their baby during pregnancy through fear that they might lose their child. Sometimes these fears lasted a long time after birth. One mother explains that when she found out at 20 weeks that her baby had a serious defect she didn't feel able to plan for his birth or the future until he was about two years old.

Some mothers described feeling that what was happening was out of their control. Parents were frightened about the unknown and what would happen at birth. One mother who discovered that one of her twins had hypoplastic left heart syndrome said she was cut off from the contact with midwives she could have expected in a normal pregnancy and it felt as though she was going through a bereavement. Some mothers experienced feelings of 'Why me?' and began to worry about the cause of their baby's heart defect (see 'Your Ideas about causes').

Some fathers found their own distress so great that they could not give their wife proper support. One father describes how his wife needed to be able to talk about what was happening to them, while he couldn't talk to anyone about it until their baby was born. For another father who recalled feeling numb, devastated and shocked when his wife told him that their unborn baby had a heart defect, an additional problem was the effect the news would have on his mother.

Feelings were mixed about getting the diagnosis during pregnancy. One mother wished she hadn't discovered her baby's heart defect antenatally and had been able to bond with her baby and have a worry-free pregnancy. Another was glad that they discovered her son's complex heart condition during pregnancy, as it meant that the best possible medical care was given to him when he was born and she had a chance to prepare emotionally. One mother whose baby was diagnosed when she was three weeks old said she was glad she hadn't found out in pregnancy.

When parents discovered after birth that their child had congenital heart disease, many experienced disbelief, denial and shock because their pregnancy had been normal. One mother couldn't bear to acknowledge there was something wrong with her baby, while her husband felt confident it would be repaired and then all would be well.

Some felt angry that their child's defect had not been picked up earlier, particularly if the baby was suffering severe symptoms when the diagnosis was eventually made. A father describes his feelings of fear, disbelief and anger when his 3-month-old son was diagnosed with a ventricular septal defect.

One mother whose concerns about her baby's symptoms had been ignored for five months felt relief that she was being taken seriously and finally her baby would be treated.

One baby who had not been diagnosed at birth needed emergency surgery at the time of diagnosis. His parents recalled being on 'auto-pilot' so that it wasn't until later when they got home that the enormity of what they had gone through had hit them.

A father recalled that he nearly passed out when they were told his son would need open heart surgery, which they had been hoping wouldn't be necessary. Some fathers hid their feelings and tried to be strong for their partner. Others focused on finding information to better understand their child's illness.

Sometimes the heart condition is not picked up until the child is much older. One mother describes the shock, anger and relief she felt when she was told her two and a half-year-old's diagnosis.

Last reviewed July 2018.

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