Perinatal hospice offers an alternative for parents of fetuses with terminal conditions

While debates rage over abortion, they obscure other heart-wrenching issues that expectant parents can face. Among the most difficult but rarely discussed are decisions about fetuses with severe health problems that are expected to pass away shortly after birth. 

Many women have experienced miscarriages in the early stages of pregnancy. These occur mostly during the first trimester. But people often fail to consider later term loss. Each year, thousands of expectant parents face terminal prenatal diagnoses and perinatal loss. In 2006, there were 25,972 reported fetal deaths at twenty weeks or later. And there were an additional 19,041 live-born infants who died at less than 28 days of age. 

The leading cause of death among fetuses and infants is birth defects such as congenital malformations and chromosomal deficiencies. Infants with certain terminal conditions, known as fetal anomalies, have an even greater chance of a radically shortened lifespan. In 2005, 6,925 fetal and infant deaths in the United States were caused by fetal anomalies. Some of the babies with these conditions are expected to live mere hours after birth.

While technological and medical advances, including the ability to conduct fetal surgery, have improved the chance of survival for some of these severely ill babies, many conditions remain incurable and untreatable.

Most ultrasound studies that are capable of detecting terminal conditions cannot be performed until 18-20 weeks of gestation. Many parents choose late-term abortion because they feel they have no choice – the only alternative is to watch their baby suffer and die after birth. Sometimes the child survives for a brief period, but it usually is not an extended, good quality life.

But parents have another choice that many are unaware of: perinatal hospice. This option allows parents to accept that their baby will not survive long-term and begin preparing for the loss without an early termination of the pregnancy. This is a new concept that is still not yet widely known, but it is beginning to grow.

Perinatal hospice programs serve families who anticipate that time with their baby will be brief. Hospice services begin at the time of diagnosis when the parents realize that death is probable or imminent. Expectant and new parents can find comfort in a program that supports them and their baby from the beginning, during pregnancy and after birth.

There are more than 150 perinatal hospice programs nationwide. Locally, the Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment has a Perinatal Palliative Care Initiative. According to its website, CHOP’s program works with expectant parents to create a birth plan that is consistent with their hopes, goals, and values, helps families develop coping skills, explores medical decisions, helps the family to make memories with their child, and provides a safe environment for families to discuss their experiences. The program works with referring physicians and the family to “develop a plan that will work for everyone.”

While it is admirable to maintain hope for sick babies, there are times when parents and medical providers may decide that expensive, invasive treatment is not the right choice. And for these situations, perinatal hospice is an excellent alternative to help both the parents and the infant in a challenging and often devastating situation.