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Neonatal Palliative Care: Focus on Life

Make Detailed Plans continued...

One thing parents need to understand about the diagnosis is that doctors can only provide an average life expectancy -- and no individual is exactly average. Parents can sometimes be just as distressed if a baby surpasses his life expectancy as they would be if he didn't reach it. This distress is caused in part when parents don't know what to do with their child if he lives longer than expected. For this reason, contingency plans should always be in place.

In seeking information, parents may want a second opinion. A second opinion in some cases can be helpful, even if it only confirms the initial diagnosis.

Parents may come across Internet message boards and blogs in their research. These can often provide parents useful advice from others who've had similar experiences, such has how to explain the circumstances to a baby's siblings. However, parents should be wary of what they read. Anecdotes about miracles posted on blogs can sometimes lead to unreasonable expectations and further pain.

Palliative care professionals recommend caution when parents share their situation with others. Parents should consider discussing their situation and plans with family and friends that will be supportive. Discordant opinions from loved ones can sometimes cause pain and guilt.

Know that It's OK to Grieve and That Everyone Grieves Differently

Not all expectant parents feel it's OK to mourn the loss of a child they may never know.

It's usually helpful to grieve and talk about your grief with the other parent. Couples need to understand that each individual grieves differently. Some couples report that their marriages were saved after they understood that their spouses were grieving just as intensely as they were, even though they showed less outward emotion.

Neonatal Palliative Care: Pregnancy

Before birth, health care providers will assist parents in putting all plans in place for the baby's birth, life, and possible death. When a baby is expected to live longer than a couple of days, parents often have the option of taking the baby home. In certain cases, perinatal hospice services can assist in planning the transition home and arrange in-home care with the parents.

Care at this time may focus in part on the psychosocial and spiritual wellbeing of the parents and siblings. Families will be referred to a social worker or other mental health professional and, if desired, to a hospital chaplain.

Parents are permitted to include relatives, close friends, or clergy in their consultations and decision making. Child life specialists can assist with seeing that siblings' emotional needs are met and that their questions are answered.

Neonatal Palliative Care: Delivery

When a newborn is not expected to live long after birth - be it hours, days, or weeks - the birth plan may include limiting the number of people in the delivery room.

For a normal birth, there may be several health care professionals in the room. For a newborn with a short life expectancy, depending on what life-prolonging measures will be taken, the delivery may be attended only by the doctor. This helps to make the delivery as simple and intimate as possible and maximizes the time parents can spend alone with their child.

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