Educational outcomes following preterm birth

2. How preterm birth can affect parents' wellbeing

Having a preterm baby can be a stressful experience. A preterm birth may be traumatic and parents may be separated from their baby for an extended period of time. Caring for a baby in a neonatal unit may also be worrying and stressful, and this can last for weeks or months. For example, preterm babies are often looked after on a neonatal unit until they reach the time they were due to be born; for extremely preterm babies, this can be many months.

Parents of preterm babies are more likely to have anxiety, depression and post-traumatic stress than parents of babies who were born at term. As their preterm baby grows up, parents may also be anxious or worried about their child’s health and development.

Preterm born children may have multiple appointments with different professionals, such as a paediatrician, therapist or health visitor. Parents can find it frustrating if they have to tell each new professional about their child’s birth history because the information has not been shared routinely. This can be upsetting for parents, because retelling their story can trigger feelings of anxiety or depression.

Not all parents of preterm babies will be anxious or stressed; some will have no concerns at all. However, it is important for preschool professionals to be aware of these concerns so that they can respond to parents in a sensitive manner when discussing their child’s journey.

Parents of children born preterm were asked about how the experience affected their wellbeing. Select the images to hear some of their answers.

It is a rollercoaster from the day you go into labour and I don’t think it really ends. When we eventually came home, we felt shell-shocked. All the busyness of the NICU had gone and we were responsible for this very fragile little life. It took time to build my confidence that I could give her the care and interaction she needed, after weeks spent watching her in the incubator. We were physically, mentally and emotionally drained and that did add strain to our family dynamics for a while.

So we worried about his development, you know, would he ‘catch up’? Should he be doing more by now? What would his future be like? We didn’t want him to miss out on opportunities so we focused on trying to make things as ‘normal’ as possible, keeping active to support his progress but, at the same time, recognising the reality that he does have issues and that we need to make some provision for them.

My child is really vulnerable to infections and so even a cold can result in them becoming seriously unwell. It was hard not to wrap them in cotton wool at first, out of fear of them ending up back in hospital. Learning how to help them to have full experiences whilst keeping them safe and healthy hasn't been easy. I think people often don’t understand the impact of my child’s health issues and the medical interventions they experienced so early in their life. I know some people assumed I was being overprotective but really I just needed them to listen and be sensitive to our context.

So one of the issues that has been hard to deal with, is having to repeatedly explain your baby’s difficult start to life. So this, at a time when many families are feeling fragile after their baby has spent time in neonatal care. It’s just a real shame in this day and age that information about your baby can't be stored centrally so all the teams involved with your baby’s care can see it. I think that this would stop the need to repeat the same information over and over again to different people and it would make such a difference to families of premature babies to have this joined up care.