Coping with long-term outcomes

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Learn about long-term outcomes for premature babies about to be discharged from the NICU. Most ongoing health concerns following discharge are minor.

Key points

  • If there is some kind of problem, early detection and treatment of the problem is always the best course of action.
  • Chances of a premature baby developing a disability depend on how premature they were, birth weight, size, head circumference and complications after birth.
  • Having a child with a disability affects everyone in the family including your other children.

Most premature babies who are discharged from the Neonatal Intensive Care Unit (NICU) will go home and develop into normal healthy children, however some do not. As with all things premature, the earlier a baby was born and the lower their birth weight, the more likely that they will have some type of ongoing health concern. The extent of these concerns depends on the types and severity of problems they experienced in the NICU.

For those babies who do have ongoing health concerns following discharge from the NICU, most will be minor. As it can be difficult to predict long-term outcomes, some parents will have anxiety and fear that their healthy baby may suddenly develop serious and perhaps unforeseen problems. Regular visits to follow-up clinics and to the doctor may help allay these fears. Additionally, if there is some kind of problem, early detection and treatment of the problem is always the best course of action.

The nature and degrees of disabilities are enormous. Some are very minor and barely noticeable while others are severely debilitating. Some have a physical dimension, some an intellectual one, and some disabilities will affect both the body and the mind. Some disabilities appear immediately, others, mostly intellectual and emotional ones, may take years to show up. Although for most families disability will not be an issue, or it will be a minor one, some families will have their lives changed and challenged in a significant way. It should be remembered that full-term babies can also grow to have disabilities that can affect the child in all these different ways as well.

The chances that a premature baby will develop a disability and the severity of that disability depend on several factors including:

  • how premature the baby was born
  • the baby’s birth weight
  • the baby’s size relative to their gestational age
  • the head circumference
  • complications, especially those that affect the brain

Raising a child who has a disability can have a huge impact on everyone in your family: your child, their siblings, and you and your spouse.

Keeping to your usual family routines as much possible can help your child adjust to their disability. Many children who have a disability learn to adjust to their situation over time, with the right support. But like adults, children have good days and bad days.

It can be a challenge for parents to meet the needs of all their children while looking after a disabled child. The experience can also have a huge impact on the relationship between the parents.

The articles in this section offer some suggestions to help all the members of your family cope with your child’s disability.

Last updated: October 31st 2009