“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 serious congenital heart defects 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 congenital heart defects 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 congenital heart defects 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 congenital heart defects
Every year, 500 children are born with congenital heart defects 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 congenital heart defects.
Earlier studies have shown that children, adolescents and adults with congenital heart defects 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 serious congenital heart defects 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 congenital heart defects.
Researchers at NIPH have now found that psychological and developmental difficulties can be seen already by six months of age among infants with congenital heart defects.
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 congenital heart defects in MoBa were compared with 61 032 healthy children of the same age.
Psychological reactions among infants with congenital heart defects
Researchers found that infants with moderate and serious congenital heart defects had an increased risk for emotional reactivity than children with mild congenital heart defects 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 congenital heart defects appear early and that in all major cases they apply to those with moderate to serious congenital heart defects. 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 serious congenital heart defects are 3 times more likely to have gross motor development deviation such as rolling from back to stomach than children without congenital heart defects. 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 congenital heart defects. These are skills that over 90 percent of children in the control group had by 6 months.
The study also showed that children with congenital heart defects 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 congenital heart defects already from 6 months of age. Social development deviation in this case means that a child does not return a smile or respond to its name. Children with mild and moderate congenital heart defects 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 congenital heart defects over time.