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Illness and Death in Infants

By Steven D. Blatt, MD, Professor of Pediatrics, Director, Division of Pediatrics, State University of New York, Upstate Medical University; Director, ENHANCE Services for Children in Foster Care, State University of New York, Upstate Medical University

The medical needs of premature newborns or ill infants often require that they be separated from their parents temporarily. Although doctors may allow parents to hold their infant some of the time, medical care often sharply limits the opportunity for parents to interact with their infant. In addition, parents are usually emotionally distressed by their infant's condition. It is easy for parents to feel helpless at a time when they are needed most. Separation and parental distress can reinforce feelings of inadequacy or guilt, particularly in severely ill infants who are hospitalized for a long time.

Illness in Infants

Parents need to see, hold, and interact with their infant as soon as possible and as much as possible. Even with severely ill infants, parents often can help feed, bathe, and change their infant. Skin-to-skin contact between parents and infants is encouraged, because infants who experience skin-to-skin contact gain weight faster than those who do not. Breastfeeding may be possible, even if the infant must be fed through a tube at first. Many neonatal nurseries help families store and use breast milk for their child. Many hospitals encourage parents to stay at their infant's bedside around the clock and even participate in family-oriented hospital rounds where they can interact with doctors, nurses, and other staff and discuss treatment plans.

If an infant has a birth defect, parents may feel guilt, sadness, anger, or even horror. Many feel even more guilt because they have such feelings. Seeing and touching the child can help the parents look beyond the birth defect and see the infant as a whole person. Information about the condition, possible treatments, and the infant's prognosis can help the parents adjust psychologically and plan for the best medical care. Counseling sessions may help some parents.

Death in Infants

Death of an infant is always emotionally traumatic for parents. However, if a newborn dies before being seen or touched by the parents, the parents may feel as though they never had a baby. Although painful, holding or seeing the dead baby can help parents begin to grieve and begin the process of closure. Parents of a stillborn infant sometimes find comfort from dressing the infant in baby clothes and taking pictures. This practice humanizes the infant and reinforces that the infant was a real part of their family.

Did You Know...

  • Seeing and touching an infant who has died helps parents begin to grieve.

Emptiness, lost hopes and dreams, and fear may overwhelm parents, who may become depressed. Parents tend to feel guilty, blaming themselves even when they are not responsible for the death. The grief and guilt that follow may strain the relationship between parents. The grieving process may also mean that parents are unable to attend to the needs of other family members, including other children.

Many families whose infants are severely ill or who have died can benefit from counseling from psychologic or religious personnel. Parent and family support groups also may help.

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