Prematurity and starting school: Sebastian’s journey

Sebastian was born at 27+2 weeks’ gestation in March 2019, weighing just 1lb 9oz (706g). Whilst the NICU team had made us aware of the potential lasting impacts of prematurity – such as developmental and neurological challenges – school seemed distant and almost trivial during those early days and months when there was so much yet to overcome.

After a very long NICU stay of 209 days, our son was finally discharged from hospital at the beginning of winter 2019 and we chose to isolate during his first RSV season. The arrival of the COVID pandemic the following March meant that we continued shielding for years longer, keeping him out of nursery until just after he turned three years old.

The next phase 

The difficulties that came with starting nursery and school were unexpected. In hindsight, I’m not sure we fully understood how prematurity might impact on schooling. We’d been so consumed by, and focused on, the medical side of prematurity.

Sebastian started to attend nursery at a school (the same school he attends now and is just about to finish his Reception year) and the teaching staff soon raised concerns about his social development,interactions with peers, ability to listen, follow instructions, and stay on task. This was not something that had been obvious to us at a one-to-one level at home. 

Moving on to big school

When the time came to applying for schools for the start of Reception the following September, we decided that the smaller school setting that he attended would be the best fit for his primary education to minimise the level of distractions. We already had a relationship with the school due to his nursery attendance and therefore had a good sense of the level of support the school would be able to continue to provide once he started his formal education. 

By the end of nursery year, the school’s support had led to significant progress. But we were not prepared for the sensory difficulties that emerged in and out of school, and coincided with the start of Reception year. All of a sudden, many activities that should be fun for a young child became overwhelming for him: any structured activity, a birthday party, theatre show, or even story time in class, would fill him with fear and anxiety. 

School support

As parents, we were unprepared for these difficulties and for the types of conversations that we needed to have with school staff around this. We are fortunate that the school has been proactive and supportive and, step by step, Sebastian has been making good progress over the course of the year.   

We are thankful to his school for their commitment and dedication to his learning and development. Starting school is a huge step that can feel daunting, particularly for children who have faced unique circumstances such as prematurity. It is an incredibly emotional journey and there have been a lot of tears, mostly from myself, but also from school staff who care so deeply.  

Looking ahead

Sebastian will be moving into Year 1 in September, and we hope that, with continued support, the difficulties that he has faced lessen for him over time so that he can fully enjoy his education.

To any parents with prematurely born children starting Reception this year, my advice would be to work closely with the teaching staff and that any therapists involved are in contact with the school. This has been beneficial for supporting the teaching staff's understanding of Sebastian's needs and implementing helpful strategies for him.

Thanks to Deborah for sharing Sebastian’s story.