Development and Follow-Up After Prematurity

Most children born preterm do well

NICE opens its information for the public with the sentence that should frame everything else on this page: "Most babies who are born early or 'preterm' (before 37 weeks of pregnancy) go on to have healthy childhoods." The follow-up system exists because a minority will need extra support and because finding them early works, not because prematurity is a diagnosis with a fixed outcome.

Who gets enhanced follow-up

NICE guideline NG72 sets out who should be offered enhanced developmental support and surveillance by a multidisciplinary team, up to two years corrected age. It applies to children born preterm who already have a developmental problem, and to those at increased risk, defined as:

• born before 30 weeks' gestation, or
• born between 30 and 36 weeks and six days with one or more of: a brain lesion on imaging likely to be associated with developmental problems, such as a grade 3 or 4 intraventricular haemorrhage or cystic periventricular leukomalacia; grade 2 or 3 hypoxic ischaemic encephalopathy; neonatal bacterial meningitis; or herpes simplex encephalitis in the newborn period.

NICE also says teams should consider enhanced follow-up for children who do not meet those criteria but are suspected of being at increased risk. If your baby was, say, 31 weeks with severe retinopathy or surgical necrotising enterocolitis, that discretionary route is the one to ask about.

The appointments you should be offered

NG72 sets a minimum for children having enhanced developmental surveillance:

• two face-to-face follow-up visits in the first year focused on development, one between three and five months corrected and one by 12 months corrected, and
• a detailed face-to-face developmental assessment at two years corrected age.

At each visit, professionals should discuss your concerns, check for developmental problems, measure length or height, weight and head circumference, correct for gestational age up to two years, and refer on if something is suspected. NICE's public summary adds that these appointments involve a doctor and another health professional such as a physiotherapist, occupational therapist or speech and language therapist.

You should also be given a single point of contact within the neonatal service for outreach care after discharge. If you do not have a name and a number, that is a reasonable thing to ask for.

The assessment at four

Separately, NICE recommends a face-to-face developmental assessment at four years — at uncorrected age this time — for all children born before 28 weeks. NICE's own explanation of why is worth knowing: it is timed so that "this will help to spot any problems before they start school".

This appointment is often the one that gets lost, because by four the neonatal unit feels like history and families have moved house or GP. It is the one worth chasing.

What the risks actually are

NG72 lists the developmental problems that are commoner after preterm birth, and it lists them with their independent risk factors rather than as a blanket statement. Children born preterm are at increased risk of cerebral palsy, motor function problems including developmental coordination disorder, learning disability, special educational needs and lower educational attainment, and executive function difficulties. Across almost all of them NICE notes the same pattern: prevalence increases with decreasing gestational age.

The risk factors that recur are specific and neonatal — grade 3 or 4 intraventricular haemorrhage, cystic periventricular leukomalacia, neonatal sepsis, bronchopulmonary dysplasia still needing ventilation at 36 weeks postmenstrual age, surgical necrotising enterocolitis, severe retinopathy of prematurity, being small for gestational age. If none of those applied to your baby, the guideline's risk statements are not describing them.

NICE is also honest about the limits of the evidence: for some problems there was an absence of evidence about overall risk, evidence in 11 to 18-year-olds was limited, and some studies described specific gestational ages that the committee could not extrapolate from. That is a guideline telling you it does not know everything, which is worth more than a confident number.

Enhanced surveillance is in addition, not instead

Enhanced developmental support and surveillance sits on top of the universal checks every child gets. Your baby still has the routine health visitor contacts and NHS development reviews, still has newborn hearing and blood spot screening, still has the vision and hearing checks that every child has. NICE also expects a written discharge plan, agreed with you, that names the antenatal and perinatal risk factors relevant to your baby and is shared with primary and secondary care.

That discharge plan is a document worth keeping. It is the thing that explains to a GP three years later why your child is on a follow-up pathway, and it is far easier to hand over than to reconstruct.

School, and the years nobody prepares you for

NICE notes that children born preterm are at increased risk of special educational needs, and of lower educational attainment at the end of the Early Years Foundation Stage and at key stage 1, with the risk rising as gestational age falls and being greater for reading and maths in children born before 26 weeks. Executive function difficulties — attention, working memory, organisation — are also commoner, and they tend to surface at school rather than in the toddler years.

The practical implication is that you may need to tell a school something a health visitor already knows. Schools are not routinely told a child was born preterm, and a summer-born child who was also three months early can be functionally a year younger than classmates. Saying so early, in writing, is more useful than waiting for a problem to be noticed.

Growth and catch-up

Growth is plotted with correction for gestation, and preterm babies often move up centiles over the first year or two. Head circumference is watched particularly closely, because head growth tracks brain growth. Slower catch-up is not automatically a problem — a baby who was growth restricted before birth may simply be small — but it is something the follow-up team is actively monitoring, which is one reason those measurements are taken at every visit.

If you are worried between appointments

Bliss's advice is the practical version: your baby's development should be assessed by their due date rather than their birth date, always remind professionals of the corrected age, and if you have concerns, raise them. NICE tells professionals to "carefully evaluate and review any developmental concerns reported by parents or carers", which means your observation is meant to be evidence, not background noise.

Your health visitor, GP and the neonatal outreach or follow-up team are all routes in. You do not need to wait for the two-year assessment to say something feels wrong.