Perinatal Hospice  – Part 2
by Tracy Winsor

( Part 1 can be found here. )

Sometimes the happy occasion of a prenatal ultrasound suddenly isn’t.

South Carolina expectant parents, Keith and Katherine Brown, learned that their first pregnancy was complicated by a prenatal diagnosis when abnormalities were detected during an anatomy scan at nineteen weeks gestation.

There were a number of issues, but most notably there was excess fluid in their daughter’s skull and abdomen and all four of her limbs were atypical. Additional testing was inconclusive, but the doctors suspected that Baby Grace had a rare genetic condition.  The prognosis was grim.

“We were presented with many new medical terms and I just kept thinking that this was not supposed to be happening,” shares Katherine Brown.  “Learning our first child had defects that would not likely allow her to live outside the womb was heart breaking.”

The Browns were fortunate that a perinatal hospice service  which provided support to parents carrying to term following a life-limiting prenatal diagnosis existed in their community.  A genetics counselor at their maternal fetal medicine practice referred them to Perinatal ComfortCare , which provided on-going contacts and practical guidance for the Browns over the next eight weeks.   Perinatal hospice is a life-affirming care option for parents committed to carrying a baby with a prenatal diagnosis to term.

Tammy Tate, CEO/Founder of Perinatal ComfortCare, met with them to share information regarding how they could cherish the time they had with their daughter, and memory-making options they could request at birth. When Grace was born still at twenty-seven weeks gestation, Tate was there at the hospital providing comfort and consolation, and assisting in coordinating their care.

“The practical guidance she gave us in terms of preparing us for what we would experience in the hospital was invaluable,” notes Brown.

“I had no idea I could tell the hospital staff what I wanted during delivery or that I could hold my baby and spend time with her,” she adds.  “We would’ve never thought of taking pictures of us holding Grace, and I am not sure we would have had a funeral without Tammy’s guidance.”

First introduced in medical literature in 1997 , perinatal hospice care provides comprehensive support to expectant parents told that their baby will die at or shortly after birth.  Utilizing a multidisciplinary team including genetic counselors, obstetric and neonatal physicians, nurses, clergy, social workers, etc., perinatal hospice services support parents during pregnancy, and for at least one year after delivery.

Parents’ needs are addressed by providing appropriate medical consults, assistance preparing birth plans, guidance regarding options for newborn care, and bereavement support.  This specialized service for parents prior to delivery allows them to prepare fully for birth, and to parent their baby for the time they will have no matter how brief or how frail that child’s life may be.  The parent response to perinatal hospice is positive.

Nancy Mayer-Whittington, co-founder of Isaiah’s Promise , a perinatal hospice service in Maryland, is herself a mother who carried to term following a prenatal diagnosis.

Mayer-Whittington observes, “I would have felt less isolated and less alienated had I received the care we at Isaiah’s Promise provide to parents. Having the support of someone who can suggest options and understands the experience can make all the difference in the world.”

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Tracy L. Winsor, MPA, is Cofounder of Be Not Afraid (BNA) ,   a private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. She can be reached directly at [email protected].

References:
Link 1 http://www.perinatalhospice.org/home.html
Link 2 http://perinatalcomfortcare.org/
Link3 http://www.ncbi.nlm.nih.gov/pubmed/?term=Perinatal+hospice%3A+should+all+centers+have+this+service%3F
Link 4 http://www.isaiahspromise.net/