High-risk infant follow-up

Our approach to high-risk infant follow-up

Babies who have had a difficult neonatal period — preterm birth, hypoxic-ischaemic encephalopathy, neonatal seizures, intraventricular haemorrhage, perinatal stroke, congenital infection, or any other concern that brings them out of the NICU as a high-risk infant — need a structured, integrated programme of neurodevelopmental surveillance for the first three years of life. The brain is at its most plastic during this window, the trajectory is most modifiable, and early intervention is most effective. Our approach is to put this surveillance in one place, with one specialist who knows the whole story and is empowered to act the moment a finding appears.

The babies who benefit most from a structured follow-up programme include those born preterm (especially under 32 weeks or under 1500 g), those with moderate-to-severe hypoxic-ischaemic encephalopathy who received therapeutic hypothermia, those with neonatal seizures of any cause, those with intraventricular haemorrhage grade II or higher or with periventricular leukomalacia, those with perinatal arterial ischaemic or venous stroke, those with congenital infections (CMV, toxoplasma, Zika and others), and those with genetic or syndromic diagnoses affecting brain development.

Our model is integrated rather than fragmented. The visits are structured around developmental milestones and the windows when each scale is most sensitive; the consultations with paediatric ophthalmology, audiology, physiotherapy, occupational therapy, speech and language therapy, dietetics and clinical genetics happen alongside neurological review rather than in scattered separate clinics; and the plan is the same plan, with everyone reading from the same written summary.

What the visits look like

We see high-risk infants at structured time-points across the first three years: typically at 3, 6, 9, 12, 18, 24 and 36 months corrected age, with additional reviews whenever a finding or family concern brings us together earlier. The visits are not the same at every age; each uses the assessment tool that the evidence shows is most predictive at that age.

In the first months we use the Prechtl General Movements Assessment (GMA), which is the single most predictive tool we have for later cerebral palsy when used in the fidgety-movements window at 3 to 5 months corrected age. We pair it with the Hammersmith Infant Neurological Examination (HINE), which gives a structured neurological score that can be tracked over the first two years and which has well-validated cut-offs for cerebral palsy risk.

From around 6 months onwards we add the Bayley Scales of Infant and Toddler Development (Bayley-4), which give standardised scores across cognitive, language, motor and adaptive domains. The Bayley is repeated at structured intervals — typically 6, 12, 18, 24 and 36 months — so that the trajectory of each domain is measured against the same yardstick rather than against impression.

Targeted neuroimaging, EEG and laboratory testing are added when a neurological concern appears — focal motor signs, suspected seizures, regression, abnormal head growth, or any pattern that warrants confirmation. We do not over-investigate, but we do not under-investigate either; the threshold is shaped by what the structured tools show at each visit.

Where the picture needs another set of eyes, I bring in the colleagues we work with regularly — paediatric ophthalmology (retinopathy of prematurity follow-up, cortical visual impairment screening), audiology, physiotherapy and occupational therapy, speech and language therapy, dietetics for feeding and growth concerns, paediatric gastroenterology where reflux or feeding is part of the picture, and clinical genetics where the underlying cause is still being defined. The consultations are fast and focused, the findings come back to me, and the plan stays single and integrated.

Every visit ends with a written summary you keep — what we found, what it means, what we are doing about it, and when we will see each other next. This is the document you share with your community team, your therapists and any other clinician you see between visits.

Early intervention — starting now, not later

The first three years are not a waiting room. Every week of brain development that passes is a week of plasticity we cannot get back. Our philosophy is that early intervention starts the day a concern is identified — not after months of further investigation, not after the diagnostic label is fixed in stone. We begin the right therapies in parallel with the work-up, because the evidence is clear that intensive, goal-directed early intervention started early outperforms the same intervention started late.

Specific findings drive specific actions. Abnormal Prechtl GMA fidgety movements or low HINE scores trigger immediate referral for early physiotherapy with techniques that have the strongest evidence in infants with emerging CP — particularly task-specific, goal-directed training and constraint-induced movement therapy adapted for the very young child. Early signs of feeding or swallowing difficulty trigger speech and language therapy and a dietitian. Vision concerns trigger ophthalmology and early visual stimulation. Hearing concerns trigger audiology and early language-environment work. Communication delays trigger speech and language therapy at the right developmental level.

For selected high-risk infants, regenerative and neuromodulation approaches — in the framework of scientific studies — become part of the conversation. Stem-cell therapies (from a number of different sources, each with its own biology and evidence profile), exosome therapies (whose source determines their content, allowing patient-tailored selection) and photobiomodulation are at an active research frontier in perinatal brain injury. Their scientific efficacy in this population is still in the research phase. Where we discuss them, it is with very explicit honesty about what is and is not known, in carefully selected children, under appropriate authorisation, combined with intensive rehabilitation around the intervention — because the biology of plasticity argues for combining them, not isolating them.

And the conversation with families is part of the intervention. We explain what we are seeing, what it might mean, what is changeable and what is not — without false reassurance and without unnecessary alarm. Families who understand the trajectory and the plan are families who can carry it out at home, every day, in the small interactions that add up to most of what the brain learns in the first three years.