Published April 2012, next review April 2015

Taking your premature baby home from hospital

Health problems and disability

Premature babies are more susceptible to certain health problems than term babies, so your healthcare team will take special care when assessing your child's development.

Hearing and vision problems

Premature babies are more likely than their term peers to develop hearing or sight problems. They are also more likely to develop retinopathy of prematurity, which can impair sight, but this can often be prevented if caught early on. Other common sight problems include squints and refractive errors.

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Cerebral palsy

This is a group of conditions that affect movement and co-ordination. It affects about one in 400 children and is more common among babies born prematurely, with those born earliest being at highest risk. 

Symptoms of cerebral palsy

The symptoms of cerebral palsy can range from severe to very mild, and include difficulties with:

  • walking
  • posture
  • learning.

Help for children with cerebral palsy

The condition is managed with support from a range of therapies, including physiotherapy and occupational therapy, and with medication to help with stiff muscles, and sometimes surgery. Find out more at SCOPE or call 0808 800 3333.

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Learning problems caused by prematurity

Although some children born prematurely do exceptionally well at school, a premature baby is statistically more likely to develop problems with learning that could require extra support at school. The later the baby is born, the milder the difficulty tends to be. Children who have intrauterine growth restriction/fetal growth restriction (FGR) seem to have a lower IQ than other children. Researchers have found that pretern children were lagging behind their peers at school and experiencing difficulties in a number of curriculum areas at age six. There does seem to be some association between learning difficulties and very low birthweight.

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Behavioural difficulties associated with premature birth

Studies have found higher levels of conditions such as attention deficit hyperactivity disorder (ADHD) among babies born prematurely. They are more likely to be less organised and have a shorter attention span. Children who were more premature are not necessarily the worse affected. Although higher levels of emotional, attention and peer problems have been reported into their teens, studies have not shown signs of more serious conduct disorders, delinquency, drug use or depression.

Attention deficit hyperactivity disorder (ADHD)

This disorder affects the way people behave. ADHD does not affect people's intelligence, but may cause learning difficulties. An estimated three to nine percent of school-aged children in the UK are affected by ADHD.

The symptoms of attention deficit hyperactivity disorder (ADHD) are:

  • restlessness and fidgeting
  • a short attention span
  • impulsive behaviour.

Once the disorder is identified, it can be managed with therapies and medication. Find out more at ADDISS or call 020 8952 2800.

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Health experts who may treat your child

If your child is referred to a specialist as a result of delayed milestones, you may suddenly find yourself inundated with appointments, as paediatricians will often refer your child for a broad range of assessments, to make sure that nothing is missed. These might include:

  • hearing and vision experts
  • dietitians
  • neurologists (specialists of the nervous system)
  • geneticists
  • other specialists, depending on whether your child has a specific condition.

Your child may also be seen by members of the community team, such as a:

  • physiotherapist
  • occupational therapist
  • speech therapist
  • early years team.

These experts will assess whether any therapies could help your child progress towards the developmental targets.

After this initial spate of appointments, treatment will usually become focused on the specific areas needing support, and the process should settle down into a planned course of treatment or therapy.

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Disability and premature birth

Disability is a scary word – especially if someone uses it about your child. There is still a stigma around disability, but this is almost always among people who are ignorant of the facts.

The government defines disability as 'a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities'. In practice, this can range from something like asthma to problems with walking, developmental delay or subtle behavioural problems. Many forms of disability are not immediately obvious.

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Prematurity doesn't affect happiness

The good news is that when asked to rate their quality of life or self-esteem, young adults who were born very prematurely do not score very differently from those born at term.

Doctors measure your child's progress in terms of clinical outcomes, but in fact this is only a small part of the full picture of your child's life, challenges and triumphs. In other words, premature birth may mean that your child has to work harder than others to develop some skills, but it does not need to affect his capacity for happiness.

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In this section


Taking your baby home:

You can also read about

The following organisations can give you more information about the topics covered in this section.


Sources

BMJ Best Practice (2011) Premature newborn care, Treatment, Step by step, http://bestpractice.bmj.com/best-practice/monograph/671/treatment/step-by-step.html

BMJ Best Practice (2011) Cerebral palsy, Highlights, Overview, http://bestpractice.bmj.com/best-practice/monograph/674.html

BMJ Group (2011) ADHD: What is it?, BMJ Publishing Group Limited

Cooke RW (2006) Are there critical periods for brain growth in children born preterm?, Archives of Disease in Childhood, Fetal and Neonatal Edition, Vol 91, No 1, p17-20

DH (accessed Sept 2011) National Service Framework for Children, Young People and Maternity Services: Standard 8, 4,http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4869232

DirectGov (accessed Sept 2011) Disability rights, Definition of disability under the Disability Discrimmination Act (DDA), http://www.direct.gov.uk/en/disabledpeople/rightsandobligations/disabilityrights/dg_4001069

EMIS (2010) Premature babies and their problems, Patient.co.uk, http://www.patient.co.uk/doctor/Premature-Babies-and-their-Problems.htm

Hack M, Costello DW (2007) Decrease in frequency of cerebral palsy in preterm infants, The Lancet, Vol 369, No 9555, p7-8

Pritchard et al (2009) Early school-based learning difficulties in children born very preterm. Early Human Development; 85 (2009) 215–224

Larroque B, Ancel PY, Marret S, et al (2008) Neurodevelopmental disabilities and special care of 5-year-old children born before 33 weeks of gestation (the EPIPAGE study): a longitudinal cohort study, The Lancet, Vol 371, No 9615, p813-20

Norman JE, Greer IA (2005) Preterm labour: managing risk in clinical practice, Cambridge University Press

Rennie JA (2005) Roberton’s Textbook of Neonatology (4th edition), London, Churchill Livingstone

Rodrigues MC, et al (2006) Learning difficulties in schoolchildren born with very low birth weight, Journal of Paediatrics, Vol 82, No 1, p6-14

Willacy HMD (2010) Premature Babies and their Problems, Patient Plus, No 1152

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On this page

Hearing and vision problems

Cerebral palsy

Learning problems caused by prematurity

Behavioural difficulties associated with premature birth

Health experts who may treat your child

Disability and premature birth

Prematurity doesn't affect happiness



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Feedback on health information

'They kept thinking she was deaf, but I knew it was just that she wasn't co-operating with their tests. They finally agreed with me. I did think the tests were necessary though - I was glad they did keep an eye on her.'

ELLA

'I always worried that there could be repercussions when he was older. He has a bit of a glue ear and a slight turn in one of his eyes, and these could be from prematurity. But he's perfectly alright - he might just need his eye patched up a bit.'

AMINA

TIP

If you're feeling overwhelmed by all paperwork and appointments, ask your healthcare team if there is a local care co-ordination service that can support you. The Early Support programme will provide a keyworker to help you negotiate the system. For details, contact your local council.

'Steve didn't walk til more than 23 months uncorrected, and the consultants thought he might have cerebral palsy or something, but I didn't agree because late walking runs in the family. So I made a conscious effort to be relaxed about it.'

JESSICA

'He had one small brain bleed, but it was not in a worrying place and he was never deprived of oxygen so we're very much hoping that everything's going to be fine.'

EMILY

TIP

As your child goes through nursery and schooling, explain to staff that he was born prematurely so they can keep an eye out for any learning difficulty that emerges.