Parents of children with congenital heart disease

Bereavement, sources support & reactions of others

Some parents, who discover that their child has a serious heart defect, choose to terminate the pregnancy others opt for withholding treatment allowing their baby to die naturally after birth (for more information (see Healthtalk -Ending a pregnancy for fetal abnormality). Support is available for parents faced with this difficult decision.

Other parents opt for treatment. Sometimes this is unsuccessful and a child dies. The death of a child, usually after months or years of anguish and anxiety, is an overwhelming experience. The parents of the deceased child can feel very isolated in their sorrow. Their friends and acquaintances may feel awkward or embarrassed and not know what to say to them or how to provide support.

One mother, whose son, Luke, died after surgery when he was nearly six years old, describes different people's reactions and explains how important it was to her that people continued to talk to her about him.

Another mother, whose son, Noah, was in hospital from his birth until he died 4 and a half months later, found it difficult when other mothers from the toddler and baby group in her village seemed to ignore her because they didn't know what to say to her. But at the same time she explains her concern about telling people that her first son had died, because she didn't want to upset them and describes the difficulty she had deciding which National Childbirth Trust class to go to during her second pregnancy.

Both mothers said they were still a 'mum' even though their child wasn't with them anymore and they found it hard when people talked to them in a way that suggested that they were not mothers.

The death of their child brings to an end an association with the hospital to which the family have been returning regularly for his treatments, operations or checkups. During this time parents build up close relationships with the cardiac care team. Luke's mother, who had visited the hospital weekly for six years, explained that after her son died she missed the staff, and it felt like another void in her life. Noah's mother commented that after he died she felt very lonely because she had been surrounded by people for four and a half months while her baby was in intensive care.

Both mothers described their feelings about their child's death. Noah's mother said that she did not regret the decision they had made to keep trying with different operations in the hope that her son would get better. Luke's mother recalls that deep down she knew that there was a possibility he might die, but she put those thoughts to the back of her mind. She doesn't blame any of the medical team for her son's death but is grateful to them for giving her six years with Luke.

Whole families are affected when a child dies. Luke's mum describes the impact her son's death had on his grandparents, uncles, aunts and little cousins. Noah's mum describes the impact his death had on his grandparents when subsequent children were born in the family.

There are various sources of support to help parents who have lost a child. Luke's mother had found the Child Death Helpline useful when she needed support but hadn't found the first bereavement counsellor she saw helpful. She had however found monthly visits to her GP supportive and was also planning to attend a day for bereaved parents organised by the hospital.

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Luke's mum described how her son's school reacted when he died and comments that they had been a great support for her.

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Noah's mother had got in contact with Compassionate Friends, a website for bereaved parents. She had been able to email other bereaved parents, which had helped her to feel that she was not alone.

Last reviewed December 2014.

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