Find the link to this family’s story from the Today show, here.
While I truly believe that this family is a blessing to these babies, there are families among us who may be struggling for support for their own child, their own “hospice baby.” What types of support are available for families who have an infant, or better yet, are pregnant with a baby that will not make it?
Losing a loved one is hard, even harder when that loved one is a tiny, precious baby. There are nearly 25,000 perinatal (around time of birth) and neonatal deaths. For families that lose an infant (or will lose in infant shortly after pregnancy), the first and often hardest part of their grief journey begins with accepting the loss as a real loss.
What happens when an expectant mother learns that she will lose her child to a fatal illness? Few organizations have support in place to truly help families in these positions although more and more facilities are beginning to offer perinatal palliative and hospice care programs. What is perinatal hospice? This health care model is similar to that of “adult hospice,” offering care, support, and resources for families carrying a pregnancy to term after they have received a fatal diagnosis.
Each year, thousands of parents welcome a new pregnancy into the world, only to find out within months that their baby has a fatal diagnosis. Families are thrown into a world of questions and have decisions to make for their families; questions such as whether to terminate or carry a child to term after receiving the news of this fatal condition.
The perinatal hospice model of care is such a benefit for families who choose to cherish each given moment with their baby. This care provides the resources to help families come to terms with grief and loss of a child over time. Care through perinatal hospice provides a family the chance to develop a bond with baby, make memories, and gradually begin to say goodbye. The family gives dignity to their child’s short life and truly meaningful things can come, even in the
midst of the sorrow.
Perinatal hospice allows parents to feel as if they are in control of their own circumstances in a time where a loss will take a drastic toll on health and well being of the entire family. Perinatal hospice helps families facing numerous types of fatal diagnosis of a baby during pregnancy. Health issues that perinatal hospice might assist families with include, Trisomy 18,
Potter’s Syndrome, Anencephaly, heart defects and also stillbirth.
Perinatal hospice and palliative care models allow for choices, empower families, and provide a dignified ending to a very short life.
Planning for Birth of Baby With Fatal Diagnosis
Perinatal Comfort Care
South Carolina Perinatal Palliative Care Resources
Perinatal Hospice, What do you know about it?
Postpartum Mental Health
Related articles on Perinatal Palliative and Hospice Care:
A Great Divide
Research in Palliative Care
The Need For Perinatal Hospice
Preparing for the End at Life's Beginning
Celebrating Life, Saying Goodbye