The main challenges for children born extremely preterm
Children born at extremely low gestational ages face a range of risks as they grow up. Not all babies have problems and for half of the children there are no health problems or only minor problems (for example, special needs at school to help with classwork, squints and need to wear glasses).
Although the chances of cerebral palsy at around 20% are relatively high compared to the normal population (2-4 per 1000 births), most children with cerebral palsy have mild associated disability and attend mainstream school, with only 7% have severe associated problems.
A large proportion of children will need some help at school – around 2 in 3 in our study, although the proportion who go to special schools is only around 1 in 8. The main problems seem to be associated with attention in the classroom (not usually hyperactivity), and from other studies problems with short-term or working memory and slow processing of information – hence the finding in our 6 year study that it is better to break tasks into sequential steps rather than all together in the classroom.
Overall behaviour problems are found in just over 1 in 4 children. Inattention remains the commonest problem for extremely preterm children, and some children get anxious and worried with this. Some children show symptoms like autism but it is very different from the autism we see in non-preterm children and often occurs with other disabilities. Children who grow up without serious health problems rarely develop major behavioural problems in our experience.
Extremely preterm children tend to have more chestiness than their full term classmates which is related to asthma, and children take more medicines to help prevent wheeze and cough. This seems to be because the lungs have difficulty in reaching their full development after such early births. Major illness with chest problems decreases as the child grows up.
Although growth is slow up to six years, we have shown that height and weight are showing some catch up over later childhood and that most extremely preterm children are going into puberty at the same time as their classmates.
One of the challenges is knowing how these difficulties will develop over the teenage years. For that reason we are writing to everyone to ask permission to contact the EPICure young adults when they are 19 years so we can track our findings. This is so important to know as it will emphasise to us where we need to provide better treatments and what things to avoid when looking after the present generation of extremely preterm children to ensure that we continue to improve their outlook.