Illness and Death in Infants

BySteven D. Blatt, MD, State University of New York, Upstate Medical University
Reviewed/Revised Dec 2023
VIEW PROFESSIONAL VERSION

The medical needs of premature newborns or of infants who are ill often require that they be separated from their parents temporarily, and the opportunity for parents to interact with their infant is often sharply limited by their medical needs. 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. (See also Death and Dying in Children and see Introduction to Death and Dying.)

Illness in Infants

Parents should 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 typically 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 other emotions. 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.

Infant Loss (Death of an Infant)

Loss 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 baby after death can help parents begin to grieve and begin the process of closure. Parents of a stillborn infant sometimes find comfort in dressing the infant or wrapping the infant in a baby blanket and taking photographs, footprints, or other keepsakes they can save to remember their child. 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 often 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 psychological or religious personnel. Parent and family support groups also may help.

More Information

The following English-language resources may be useful. Please note that THE MANUAL is not responsible for the content of these resources.

  1. March of Dimes: Dealing with Grief After the Death of Your Baby: A resource providing support for parents and children after the loss of a baby before or shortly after birth

  2. Caring Community: A resource providing information about palliative and end-of-life care options for children

  3. The Compassionate Friends: A resource providing support for parents and caregivers after a child dies

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