Kylie had her baby at 27 weeks gestation 4 and a half years ago. When Joseph was was 9 months old she began a blog Not Even A Bag of Sugar to try and make sense of the experience, and to help other parents. Now she works for Bliss the only UK charity devoted to special care babies and their parents, recruiting volunteers to provide support, signposting and other services to families.

At some point during your neonatal journey you will have the conversation. There are a number of conversations that take place during a neonatal stay, the “consent” conversation – here are the things we could potentially do to your baby, the “odds” conversation – here are your babies chances of survival and then perhaps the final one; “The future”.

For any baby the future is always a bit uncertain. No one knows any baby’s course of their life, babies can have a number of conditions some that are obvious at birth like Down’s Syndrome, others that may not appear until pre-school years, like Duchenne Muscular Dystrophy.

However for the baby born preterm doctors know, through research, that there are higher likelihoods that things may not always be plain sailing. The brain, having to develop outside the womb, will have been affected by a number of factors, like oxygen, the medications delivered, even separation from the primary caregiver, usually the mother. Sometimes things go wrong like brain bleeds.  During a neonatal stay crises can occur like bowel conditions such as necrotising enterocolitis, sepsis (systemic infection), heart problems like PDAs.

The conversation we had was that whilst Joseph’s later neonatal stay was largely uneventful “the future” was still uncertain. Our consultant team were fairly sure Joseph would need additional support at school, there were concerns he may need ongoing feeding support, and that he might have cerebral palsy.

As time progressed feeding sorted itself out, Joseph began to develop, whilst slower than other babies, at a rate that reflected the fact he was born 13 weeks too soon, and had experienced a number of problems.  Once we got to 21 months the consultant was deeply concerned that Joseph wasn’t walking. I wasn’t bothered, he was pulling to stand and cruising, he just preferred crawling to get around. That resolved by 2 years and Joseph began to walk. There still concerns, raised by nursery, when he was 3 and we went back to the consultant team, who didn’t feel his walking was of grave concern and again no treatment was prescribed.

The fact is there is absolutely no magical age at which prematurity just “goes away”. A lot of people, even some doctors and health visitors say, “Oh by 2 they will have all caught up”.  That, quite frankly, is utter nonsense. There is no “catch up” it’s not a race where the baby has received some sort of handicap like a fast runner might to level the playing field. Prematurity is a complex medical condition.

Now Joseph has started reception it is clear that on some levels he remains far behind his peers. His physical skills are behind, although his mental acuity is fine. He can’t write yet or hold a pen. Yes there are other boys, especially, in his class who are having trouble holding pens, so it “may” not be a prematurity issue, but I think it probably is.  And, in a sense, this isn’t an issue for me, because its expected. No baby can be born at 27 weeks gestation and be expected to just “get over that”.

What is needed, in my opinion, is a bridge over the disconnect between neonatal service delivery and education services, and other services delivered to parents of children with prematurity. Put simply, as more and more babies can be saved prematurely there will be more and more of these children in our schools, dance classes, GP services etc. It’s not enough to leave neonatal care at the door of the special care baby unit.

If a child is struggling at school I think amongst the usual questions such as, “Is there anything going on at home?” teachers should ask, “Was the child born prematurely?” because, quite frankly, it can explain a lot.

Joseph is now 4. He is proud of being a “Bliss special baby” he has volunteered on neonatal units, he has attended fundraising events.

And his mother and father are immensely proud of him.

World Prematurity Day is on Sunday 17 November 2013.