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Palliative Care Center

Neonatal Palliative Care: Focus on Life

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Make Detailed Plans continued...

Doctors recommend that before the birth, couples discuss not just the baby's life-threatening illness but his life as well. Parents have said that making plans helped them feel in control of their situation.

Parents should learn everything they can about their baby's condition. At the initial diagnosis, parents will be shocked and likely not absorb information beyond a poor prognosis. Parents can empower themselves with as much information as they can find about the diagnosis after they've had time to process the news.

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.

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