Each year, around 13,000 babies are born very prematurely (before 32 weeks’ gestation) in England alone.
Although most babies who are born early do incredibly well, being born very premature can have long term effects on a child’s development. (Prism study, 2019)
There are number of global longitudinal follow up programmes that monitor the survival and developmental outcomes of preterm infants.
In the United Kingdom EPICURE provides data on extremely preterm babies from 22 to 26 years from 1995 to 2006, EPICURE 2 from 2006 to present (see link)
EPipage is a French nationwide longitudinal follow up programme or extremely, very preterm and moderately preterm infants. The programmes aimed to improve the outcome of preterm children in France
These and other longitudinal studies have demonstrated that Premature infants still have a 79-80 times greater risk of Cerebral Palsy compared to full term individuals (HollandersJJ et al, 2019)
In addition they are at greater risk of behavioural problems, sensory processing difficulties, developmental delay, poor mental health and poor academic performance. In particular prematurity has adverse effects on maths attainment following birth at all gestations <36weeks. Impacts on IQ and basic mathematics processing <34 weeks’ gestation.
Neurodevelopmental follow up combines medical and developmental follow up to ensure that every child and their family have the best start to life.
The NICE Developmental follow up of children and young people born preterm guidelines (2017) recommends that developmental support and surveillance should be provided by the neonatal multi-disciplinary team (MDT) up to 2 years corrected to the following high-risk population:
- Born less than 30 weeks
- Born between 30-36 weeks (grade 3 or 4 IVH or PVL)
- Grade 2 or 3 HIE
- Neonatal bacterial meningitis
- Herpes simplex encephalitis
The guidelines recommend two face to face follow up visits in the first year of life that focus on development:
- Between 3 to 5
- By 12 months
- Detailed face to face developmental assessment at 2 years (recommends use ofPARCA-R to identify global developmental delay, learning disability or language problems (22-26 months)
- Face to face developmental assessment at 4 years for all children born before 28 weeks’ gestation
There are a number of different neurodevelopmental follow up programmes that are usedacross the United Kingdom. Below is an example of a neurodevelopmental follow upprogramme.
- Born less than 32 weeks
- Born less than 1000grams
- Term infant with HIE
- Other neurology or abnormal MRI
Early intervention needs to be family centred and holistic, the aim is:
- To provide families with the opportunity to look together at the next stage of development.
- To discuss any developmental concerns
- To provide national data for outcomes of this high-risk population
- To ensure no child or family slips through the net and timely early intervention is provided
The goal of early intervention is “to promote child health and well-being, enhance emerging competencies, minimise developmental delays, remediate existing or emerging disabilities, prevent functional deterioration and promote adaptive parenting and overall family function” (Shonkoff, cited in Spittle & Treyvaud 2016).
Neurodevelopmental follow up supports families with baby occupations play, sleep and eating.The neonatal MDT also review the core skills that underpin these occupations:
- Expressive language
- Receptive language
- Fine motor
- Gross motor
- Social emotional development
- Attention and concentration
- Self-regulatory skills
- General movements
- Muscle tone
Neurodevelopmental follow up begins on the neonatal unit and may include a variety ofstandardised assessments, clinical observations and discussions with the family and neonatalMDT. Below is one example of standardised assessments that might be used and when theymight be implemented.
- Before Discharge: NBAS and Prechtl Assessment of General Movement
- 3 months: Bayley and Prechtl
- 6 months: Bayley
- 12 months: Bayley
- 24 months: Bayley and Hammersmith
A comprehensive report and recommendations are provided to the family.
EISMART provide detailed leaflets to support neurodevelopmental follow up.