Handbook for Mortals : The dying of children : Seriously ill infants

Families have to share in making decisions for seriously ill children. However, an odd set of historical events and court cases in the 1980s led to a series of federal regulations in the United States restricting what families could decide for their infants if the decision might allow an earlier death. Called the "Baby Doe regulations," they have confused the medical and legal professions ever since. The latest version of these regulations states that life-sustaining treatment for an infant may be withheld only when one of these conditions is met:

  • The infant is chronically and irreversibly comatose.
  • Treatment would merely prolong dying.
  • Treatment would not be effective in correcting all of the infant's life-threatening conditions.
  • Treatment would be futile in terms of the survival of the infant.
  • Treatment would be virtually futile in terms of the infant's survival and the treatment itself would thus be inhumane.

"I'm afraid my baby is going to die. I'm afraid my baby is going to live."

Peggy Stinson, from The Long Dying of Baby Andrew

Unfortunately, it's hard to know exactly what these regulations mean. You may want more than one opinion. Often neonatologists (doctors who care for new-born and very young babies) do not treat children after they survive to be discharged from the intensive care unit. Therefore, they are often only vaguely aware of the long-term possibilities, the burdens suffered by handicapped babies, and the impact on the family. Thus it falls to the family of a tragically ill baby to gather all the information needed to make the best decisions for the baby and the family. Sometimes nature just takes away any choices and the baby dies despite treatment. But sometimes babies have an astonishing ability to linger if they are given medical support. Parents care deeply and want to do the best they can for their critically ill baby. Here are some ways to help your baby and your family.

Ask if your baby is in pain.

Babies can and do feel pain, and they have a stress response to it. Be sure she gets medication that prevents pain whenever she needs it. Even very tiny or very sick babies probably benefit from being sung to and being touched. Ask your nurse how to hold your baby. You may have to learn how to ignore tubes or wires.

Be careful of getting fragments of information about your baby.

It helps to have one doctor or nurse who is expected to give you a good overview of your baby's situation at least once every day. Ask questions and don't hesitate to ask for more explanation when the information offered is too complex. Doctors and others should be able to answer all your questions in a way that makes sense to you.

If your baby will not survive, you still can have a "family-centered death."

You should be able to have as many of your family and friends with you as you want. Even small children (especially brothers and sisters of the baby) should be allowed to be present. Portrait of mother and father holding baby The children ordinarily should be allowed to touch and hold the baby, kiss the baby, have pictures taken of themselves with the baby, preferably with a clock and a calendar nearby so you have a record of the date and time. Children do much better if they are involved. They are much stronger than most people think and do not need to be "protected" from death. In fact, they may suffer a greater loss if they have not been a part of their brother or sister's life and death. Ask for booklets that help you explain to your other children what is happening. Answer questions honestly and be patient if they ask them over and over, even years later. Be sure to include them in the religious ceremonies that are important to your family.

One 3-year-old was asked if she was sad about her baby sister dying. She said, "Yes, but she ain't goin' nowhere; she's staying right here," as she pointed to her heart. Their 18-month-old sister played in the room, climbing on chairs. In the future, she will be able to look at pictures of the three girls together and know she was there, part of the baby's life, a sister forever.

Visitors

If many people want to visit your baby, you may need to move to an area outside of the ICU. These needs probably can be accommodated. These are, after all, your family's last days with your baby.

Mementos

Consider making hand- and footprints of your baby, affixing a lock of hair to a piece of paper with a poem or other decorations, or taking pictures of the family holding your baby. These acts will have special meaning, especially if you never got to take your baby home. Many people find that they have not only lost their baby, but their chance to feel like a "Mama" or "Daddy." This grief from not feeling like a parent can be overwhelming, even if you have other children. Pictures and other mementos are tangible evidence of your baby and your loving actions as a parent.

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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