Chronic and long-term disability

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Learn about the possibility of disability. Some premature babies will develop complications that may lead to longer-term disabilities.

Key points

  • Chronic morbidity describes medical problems that endure over time such as breathing problems and reduced lung capacity.
  • Neurodevelopmental outcomes can range in severity, from a brain injury affecting fine motor skills to developing cerebral palsy.
  • Neurological problems can also affect behaviour, emotion and a child's ability to learn; these types of problems also have a large range of severity.

Some conditions of prematurity are apparent at birth, while other long-term complications are more difficult to predict. Some premature babies will develop complications that may lead to longer-term disabilities.

Some conditions of prematurity are apparent at birth. If a baby has breathing problems for example, these usually show up right away and immediate action is taken. Other complications, for example with the eyes or digestive system, tend to show up days or perhaps weeks after birth. This delayed appearance can often lead to a changing prognosis. One day a baby whose prospects are excellent may develop a new complication and a new prognosis. A baby’s overall condition can change quickly, sometimes improving and other times not, which is often a very frustrating experience for parents.

Additionally, the course of a particular complication may suddenly change, sometimes for the better and sometimes not. Even the staff of the NICU may not understand the reasons for this. These events, both positive and negative, underline the fact that there can be a lot of uncertainty in treating premature babies.

Predicting a complication's longer-term effect on a child as they grow can also hold much uncertainty.

Chronic morbidity

Chronic morbidity describes medical problems that endure over time. These can range from mild to severe. A baby born with immature lungs who requires a ventilator for days or weeks in the NICU may grow up with a reduced lung capacity, which will limit their ability to be active. The lungs may not grow properly and as the child grows into an adult, their lungs may have difficulty keeping up with their body’s oxygen needs.

Anticipating and identifying complications that are likely to become chronic can go a long way towards minimizing the impact the condition will have as a baby grows. If a particular chronic condition can benefit from therapy, then in general the earlier therapy begins, the better children do as they grow. There are limits, though; some chronic conditions may not improve no matter what strategies parents, children, and health care providers use.

Neurodevelopmental outcomes

Medical complications affecting the brain often have long-term implications for a child’s development. These may appear immediately or may only become apparent later, sometimes years later.

The range of severity of these types of problems is wide. For example, some babies who have had a brain injury will develop cerebral palsy (CP), a condition that affects body movement and coordination. CP can be so mild that it is barely noticeable and will have very little impact on a child’s life, or it can be very severe. In extreme cases, CP can leave a child unable to control their movements at all, meaning that they will be restricted to a wheelchair and will need help to perform basic tasks such as eating.

Conditions such as a severe case of CP are said to be global in effect: motor skill, or the body’s ability to move, is affected throughout the body. Other less severe neurodevelopmental problems may affect only fine motor skills. For example, a child may be able to walk reasonably well, but may have difficulty with more precise activities such as writing with a pen or pencil. Other neurodevelopmental problems are more specific to individual organs of the body, for example affecting vision or hearing rather than the body as a whole.

It is not always possible to know at first how much or what type of a neurodevelopmental condition will affect a baby in the long run.

Behavioural, emotional, and educational implications

In addition to body movement and other physical effects, neurological problems can affect behaviour, emotion, and a child’s ability to learn. Again, the range of severity of these types of problems is large. Some children are severely affected, others less so. As with most complications associated with prematurity, the severity is related to how small and how premature the child is at birth. Extremely premature babies are much more likely to develop learning disabilities, for example, than mildly premature babies.

Typically, these types of challenges, though perhaps anticipated due to brain injury, will not become apparent until later in life. Learning disabilities, for example, often do not surface until a child is actually at school.

Some types of developmental problems will show up before school age. For this reason, parents are advised to attend scheduled follow-up visits after their baby has been sent home from the NICU. If follow-up clinics are not available in your area, parents are advised to keep regular appointments with their paediatrician or family doctor with an eye to spotting problems associated with premature birth. As with most conditions, an early diagnosis allows for early intervention and, ultimately, better long-term outcomes.

More information

Last updated: October 31st 2009