Bill Seeks to Ensure Compassionate, Appropriate Response to Stillbirths

Andrew Kitchenman | December 11, 2013 | Health Care
State medical board concerned that proposal would constitute an unfunded mandate

Debbie Haine Vijayvergiya and her children Gavin and Maya.
The loss of a child through stillbirth is traumatic, and caregivers need to be sensitive to the mother’s shock and grief. In response to a woman who lost her baby in 2011 and regrets not reaching closure while in the hospital, state legislators have drafted a bill that seeks to ensure that healthcare providers are fully aware of the physical and emotional consequences of stillbirth.

The Autumn Joy Stillbirth Research and Dignity Act would require state health officials to develop policies to ensure that hospitals and healthcare providers are prepared to respond to stillbirths with sensitivity, and to gather data that could be useful in researching their cause.

The bill, S-2843/A-4280, was named after the stillborn daughter of Debbie Haine Vijayvergiya, a Maplewood woman who suffered a stillbirth in 2011.

The bill has been opposed by the New Jersey State Board of Medical Examiners, which licenses doctors in the state. In July, the board issued a statement describing the bill’s requirements as too burdensome and arguing that if passed, it would be an unfunded mandate.

The board “applauded the concepts and goals of the proposed legislation; however, it voted to oppose it . . . because of the number of additional requirements it would create on licensed physicians, as well as the Department of Health,” according to the statement.

The board also raised a concern that the measure would require the Department of Health to “become a quasi-research agency” that gathered data. Further discussion of the bill has been included on the agenda for the board meeting this morning.

Haine Vijayvergiya said her goal in approaching legislators about the measure was to assist doctors and women in obtaining helpful information for future pregnancies, and to improve hospital staff’s handling of stillbirths.

After she gave birth to Autumn Joy, Haine Vijayvergiya said, she was placed in a bed near a mother with a newborn baby, an emotionally wrenching experience that wouldn’t have occurred if the hospital had more-sensitive policies in place.

In addition, a social worker approached her with questions about whether she wanted a keepsake — such as a lock of hair — from the stillborn baby, when Haine Vijayvergiya was emotionally unprepared to answer the question. She noted that other hospitals have developed procedures that address keepsakes with more sensitivity.

The bill would require hospitals to provide psychological and emotional support to the mother and family following a stillbirth, including referring to the stillborn child by name and offering the family the opportunity to cut the umbilical cord, hold the stillborn child privately and without time restrictions, and prepare a “memory box” with keepsakes, such as a handprint, footprint, blanket, bracelet, and photographs. It also would have the hospital retain the keepsakes for one year if the family chooses not to take them at discharge.

“Unless we as a society can acknowledge stillbirth as a reality and talk openly about it, healthcare professionals, friends, families, and patients will remain unprepared to help each other,” Haine Vijayvergiya said.

The bill also requires hospitals to document information that could have contributed to the child being stillborn. This data could be used by medical researchers, as well by as women and their doctors to determine if there is a danger to a pregnancy. It also requires that state evaluate the data to identify the causes of, and ways to prevent, stillbirths.

“We need as much data as possible — stillbirth is one of the most understudied areas of medicine,” Haine Vijayvergiya said.

She noted that statewide policies could be informed by hospitals that are already providing compassionate and thorough care to mothers and families suffering from stillbirths.

“I made some decisions that I will regret until the day I die,” she said, including her decisions against holding her daughter and keeping anything to remember her by.

“I walked out of that hospital with nothing more than a handout on the stages of grief, a brochure on a monthly support group, and a pat on the back,” she said. “I’ve never felt so alone in my entire life.”

She has two living children, a daughter named Maya who is nearly 6, and a 15-month-old son, Gavin, who born a year after the stillbirth.

Bill sponsor Sen. Loretta Weinberg (D-Bergen) said talking with mothers of stillborn babies and reading about stillbirths made her see the need for the bill.

“As a mother and now as a grandmother who delivered two healthy children with no problem, I could very well imagine having to go through that,” Weinberg said.

She expressed disappointment that the Board of Medical Examiners didn’t approach her either before or after the measure was passed by the Senate. “They always seem to be late in responding to a whole variety of issues,” Weinberg said.

Haine Vijayvergiya noted statistics that there are 26,000 stillbirths in the United States annually. “I’m hoping to do a little something to save lives,” she said, adding that she understood the board’s concerns about the regulatory burden. “By no means am I trying to make their jobs more complicated, but if it happened to someone they know and they love they would feel differently.”

The Senate passed the bill by a 39-0 vote in June. The Assembly’s Women and Children Committee could discuss it at its meeting on Monday.