Research and commentary

Deteriorating infant health after heart surgery

The number of infants requiring surgery for complex congenital heart disease (CHD) such as hypoplastic left heart syndrome is increasing

A new study looks at the deterioration of infant health after discharge following congenital heart surgery.

Tregay J, Brown K, Crowe S et al (2016) Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study. Archives of Disease in Childhood 101:902-908 doi: 10.1136/archdischild-2014-308092


The number of infants requiring surgery for complex congenital heart disease (CHD) such as hypoplastic left heart syndrome is increasing. Although the number of infants who survive the initial surgery is growing, they are often left with residual complex health needs. This study explored the ways in which parents recognise and make decisions about their child’s symptoms after discharge and their experiences of seeking help.

Congenital heart disease
The number of infants needing surgery for congenital heart disease is increasing. Picture: iStock


Semi-structured interviews with parents whose child had undergone major CHD surgery in the first year of life and had subsequently died or been readmitted unexpectedly to intensive care after their initial discharge.


Of the 20 families (20 mothers, six fathers) who were interviewed, 11 were bereaved. Findings were clustered into 3 sections: symptoms; decision-making; and seeking help.

In the first section – symptoms – parents described a variety of symptoms preceding their child’s collapse, including feeding and gastrointestinal issues, respiratory distress, changes in appearance and behaviour.

Symptoms were subtle and a small number of families reported having seen no symptoms which indicated their child’s condition had changed.

The second section described parental decision-making about symptoms. Parents reported difficulties in interpreting their child’s signs and symptoms even if they had been given information on what to look for while in hospital.

Others could not recall any advice being offered and had to make their own decisions on the significance of the symptoms.

In the final section many parents highlighted challenges to accessing help. Many parents had sought help from a nurse specialist or community nurse for symptoms they thought were not urgent.

However, some described waiting until their next appointment with a cardiologist or local paediatrician for fear of appearing ‘silly’ or ‘paranoid’. Some parents reported their concerns did not appear to be taken seriously by healthcare professionals and felt they were falsely reassured about their child’s condition.

This was exacerbated when events happened out of hours.


Information given to parents to help them to recognise deterioration in health after CHD surgery would appear to be insufficient. Several barriers were identified which prevent parents from accessing expert medical advice promptly.

This may have a detrimental effect on infants who suffer complications after having CHD surgery.


Detecting early signs of decline

Despite significant advances in treatment, CHD remains a leading cause of mortality in infancy in the UK. Many deaths occur in the community or after an unexpected emergency admission to hospital. The ability of parents to recognise the early signs of deterioration in order to access appropriate and timely care is therefore vital.

Detecting clinical deterioration in infants and children is challenging, even for healthcare professionals. Many hospitals have introduced paediatric early warning scores (PEWS) to help staff to recognise and respond to the early signs of deterioration.

Altered baseline physiology

Although nurses and doctors report that PEWS are valuable, specific challenges have been identified when children have altered baseline physiology, such as those seen in CHD (Bonafide et al 2013).

When children with CHD are discharged home after surgery, responsibility for recognising and responding to deterioration shifts to the parents. In this study, while many parents recalled being given advice on the signs and symptoms of deterioration before their child was discharged, they reported difficulty in interpreting this information once they were at home.

It is unsurprising given that healthcare professionals report similar challenges in identifying deterioration in infants with CHD.

Greater involvement

A recent publication by the Royal College of Paediatrics and Child Health and NHS Improvement (2016) emphasises that recognising and responding to deterioration in children requires a ‘whole systems’ approach and greater involvement of parents and children.

It recommends that parents should be taught ‘what matters’ with regards to their child’s condition and they should be empowered to raise concerns about their child.

Complex CHD is known to carry a significant risk of mortality. In the event of unexpected complications, the clinical outcome is likely to be improved if treatment is instigated promptly.

Teaching and empowering parents to recognise and respond to the signs of deterioration while the child is still in hospital may increase their skills and raise their confidence so that they can seek timely interventions if their child’s health deteriorates.


Compiled by Sue Chapman, gulf regional clinical manager, Great Ormond Street Hospital for Children NHS Foundation Trust on behalf of the RCN’s Research in Child Health community

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