We Need to Talk About the Long-Term Needs of NICU Children

I believe my 8-year-old son Joel is still affected by his first five months spent in neonatal care.

There is a growing body of research on the long term special educational needs of children who start their lives with months in the hospital.

A groundbreaking resource for education professionals confirmed what many parents of children born significantly premature or ill know, but can only hope their child’s school understands. The research was launched by the charity Action Medical Research for Children and a research team from the universities of Leicester, Nottingham, UCL, Ulster and Loughborough.

It outlines how children born preterm often have attention challenges at school. They may have working memory difficulties and find it harder to perform mental tasks. They can have problems coordinating visual information with movements, or poor fine motor skills. And socially, they can find it harder to make and keep friends, and may struggle emotionally, becoming easily nervous, scared or worried.

So many parents of children born premature or sick are desperate for understanding from their child’s school about the particular special educational needs of children born premature, but it’s often a battle.

Many local authorities and schools are not very aware of the SEND of NICU alumni — especially the social and emotional side. This is not surprising, given how new research in this area is – but I hope things will change.

I am an author and journalist, and have just had a book published about my experience of having a high-risk pregnancy and sick baby – and what happens when the baby comes home from hospital and eventually starts school. “The First Breath: How Modern Medicine Saves the Most Fragile Lives” (published in June by Pan Macmillan) is a medical memoir crossed with a popular science book about fetal and neonatal medicine.

A premature baby in the NICU (and let’s not forget a sick baby born at term who spends months there too) is exposed to many stresses which, it’s increasingly understood, can affect neurological development. There is the constant artificial noise of a hospital ward and the artificial light and lack of fresh air. And of course, the baby in an incubator is cut off from their mother and father and is to a large degree deprived of their loving touch – while equally having to endure a vast amount of necessary but uncomfortable physical intervention from clinicians.

No wonder, then, that my son Joel finds it hard to process teachers’ instructions in noisy places like the classroom. No wonder he finds mental arithmetic so hard and needs lots of visual prompts, and no wonder he struggles with handwriting and PE. No wonder he panics at the loudness of applause at school plays, is intensely fearful when the school nurse does the annual flu vaccination and prefers to learn outside.

As one SEN expert says in “The First Breath”: “It is my belief that we as teachers must develop new generation pedagogy for this new generation of children.”

And as one neonatologist says in the book, “When we started [the field of neonatology], we were trying to save lives. We’ve got really good at that. What we now need to do is look at the quality of that survival.”

I recently met one of Joel’s neonatal consultants again and she was shocked to hear his education and health care plan — the legal document outlining his educational needs — did not mention his first months until I made sure this part of his medical history was added.

She believes educationalists and neonatologists need to talk more. I agree.