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Heartkids project

Infants with severe congenital heart defects: Emotional distress and delayed development

Infants born with severe congenital heart defects (CHD) have an increased risk of irritability, intense crying, and being more difficult to calm than healthy children. These children often display developmental delays more frequently, e.g., in rolling from back to stomach, gripping toys, responding to smiles and reacting to their name. This is shown in new research from the Norwegian Institute of Public Health.

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"This shows that as well as focusing on treatment and surgery, it is important that health personnel and parents are aware that many of the children born with severe CHD need close follow-up both mentally and developmentally," said Ragnhild Eek Brandlistuen, at the Division of Mental Health, Norwegian Institute of Public Health (NIPH).

About NIPH’s project HEARTKIDS

The NIPH is collaborating with Rikshospitalet University Hospital on a large research project: Heartkids. The project will map the mental health and development of children born with CHD from 6-36 months of age. No other studies have investigated the mental health and development among these children in infancy. Furthermore, no earlier study has related the severity of CHD to psychological and developmental consequences for the child.

Ragnhild Eek Brandlistuen, Kim Stene-Larsen and project leader Professor Margarete Vollrath, all from the Division of Mental Health at the NIPH, are working on this project.

Consequences of CHD

Every year, 500 children are born with CHD in Norway, making it one of the most common congenital malformations. Many of these children need surgery in the first weeks after birth, whilst others have small defects that heal themselves or can be repaired with simple treatment. Improved surgical techniques and early diagnosis have increased survival rates for these children dramatically. This has led to a greater focus on the psychological and developmental consequences of CHD.

Earlier studies have shown that children, adolescents and adults with CHD have increased prevalence of a range of psychological reactions, e.g. anxiety and post traumatic stress. Studies have also shown that approximately a third of children with severe CHD have development problems in school age. Little is known about when these problems first occur, and to what degree they are linked to the severity of CHD.

Researchers at NIPH have now found that psychological and developmental difficulties can be seen already by six months of age among infants with CHD.

To study this, researchers used data from the Norwegian Mother and Child Cohort Study (MoBa) at the NIPH and data from Rikshospitalet’s national heart register. Data from 236 six month old children with CHD in MoBa were compared with 61 032 healthy children of the same age.

Psychological reactions among infants with CHD

Researchers found that infants with moderate and severe CHD had an increased risk for emotional reactivity than children with mild CHD and those without. This means that the child becomes more irritable, cries more intensely and is more difficult to calm.

"These findings show that psychological reactions to CHD appear early and that in all major cases they apply to those with moderate to severe CHD. It is important that health personnel are aware of this so they can inform parents of children with heart defects and give them support and advice on how best to help these children" said Kim Stene-Larsen.

Can also lead to development problems

Results show that children with severe CHD are 3 times more likely to have gross motor development deviation such as rolling from back to stomach than children without CHD. They are also twice as likely to show fine motor deviation, e.g. not gripping toys or holding them and lifting them to their mouth compared to children without CHD. These are skills that over 90 percent of children in the control group had by 6 months.

The study also showed that children with CHD and co-morbidity, (i.e. having other disorders e.g. intestinal malformations) have an increased likelihood for social and motor development deviation compared with children without CHD already from 6 months of age. Social development deviation in this case means that a child does not return a smile or respond to his/her name. Children with mild and moderate CHD were no different to healthy children.

"These findings can have important clinical implications, for example in identifying children with increased risk for developmental delays at an earlier stage. However, it is important that we study these children over time, so we can see if these development problems persist or are just transient," added Ragnhild Eek Brandlistuen.

The project will follow children up to 3 years of age. There are few similar studies that follow children with CHD over time.