Perinatal Hospice: Strength for the Journey

The excitement and anticipation of a new baby can turn to anguish when prenatal tests bring poor results.  In that brief moment, families are plunged into a world of overwhelming grief, fear and despair.  They will struggle with a range of complex emotions and questions they never expected to face.

Perinatal hospice care is a growing trend designed to provide medical and emotional support for families who decide to continue a pregnancy when given a poor, or even fatal, diagnosis.

Perinatal hospice experts understand that to carry the pregnancy to its natural conclusion, rather than to actively choose the child’s premature death, will allow for a healthier grieving process.   Families can find comfort and strength in the midst of their grief which gives meaning to the difficult journey.

Prenatal testing and screening has raced well ahead of where it was just a few years ago.  It is now possible to test for hundreds of conditions, ranging from mild afflictions to serious and even fatal conditions.   With more and more pregnant women being routinely screened, the numbers of unfavorable diagnoses has understandably risen.

Unfortunately, the improvements in testing have not necessarily resulted in a better outcome.  Difficult decisions will still need to be made with limited information that is sometimes mysterious and uncertain.

Families need time and space to process the initial diagnosis.  Some will be counseled that abortion is a better solution than to continue a pregnancy only to watch their baby struggle or even die.  Studies, however, reveal just the opposite - that termination of a pregnancy in light of an adverse or fatal diagnosis can carry long term psychological consequences.

There are numerous blogs dedicated to the perinatal hospice concept.  One mom wrote of her personal experience in giving birth to her son, Jedidiah, diagnosed with Trisomy 13.  She said, “We have a grave to take our tears to.  My son has a place of rest – fitting for a Jedi.  An abortion would have taken that – and much, much more away from me, and it would have claimed to be the easier way out.”

She went on, "They (his siblings) got a chance to meet their brother. To love him. They also witnessed their father and I unconditionally loving Jedidiah despite inconvenience and sorrow. This is the gift Jedidiah gave to us and continues to give us."

There is no easy solution.  The exact number of families who choose to continue such a pregnancy is difficult to determine.  Some families may have faith related reasons that guide their choices. Others may hold onto the hope that somehow the diagnosis was wrong. Those who do continue with the pregnancy know that it is not easy, but express no regret.

Still others just don’t want to be the one who decides when their baby dies

Perinatal hospice allows and even encourages parents to carry their child to term; to celebrate that child’s uniqueness, to honor their dignity and worth - before saying goodbye.