Couple finds outlet for grief after losing firstborn
Stillbirth remains shrouded in silence, advocates say, but they are seeking attention from Congress
By Mary Ann Roser
January 2, 2009
The nursery was decorated, the tiny dresses were hung, and the baby already had a name: Madeleine. After 11 years of marriage and 17 years as a couple, Richard May and Kelli Montgomery of Austin were elated to become parents.
But when Montgomery recovered from her Caesarean delivery March 5, 2007, the couple left Seton Medical Center in Austin brokenhearted: Madeleine was born dead.
"We were planning to celebrate the happiest day of our lives," Montgomery said, "and our family was just erased."
She and May spent the next few months trying to find out why their daughter was stillborn, something Montgomery said she thought had "pretty much been eradicated back in the '50s." As they sought answers, they found a salve for their grief and meaning from Madeleine's death by becoming advocates of stillbirth legislation in Congress, May said.
Each year 25,000 to 30,000 babies are stillborn in the United States, experts say. Half of the time, the cause is a mystery.
The number of stillbirths is nearly 10 times that of babies who die from sudden infant death syndrome, May said.
"We had several people say, 'I thought stillbirths don't happen in this day and age, and if they do, they happen to alcoholics and crack addicts,' " Montgomery said. "There's the stigma that you've done something wrong."
Others didn't understand why they were so upset and said since "we didn't know her, how could it be that much of a loss?" Montgomery said. "We had people we thought were friends of ours turn their backs because they didn't know what to say."
Not long after losing Madeleine, Montgomery, 37, and May, 43, got in touch with the MISS Foundation, a national nonprofit volunteer organization that provides support to families that experience a death and advocates on behalf of stillbirth issues.
They got help and offered to give back, said Joanne Cacciatore, the foundation's executive director.
"There's a shroud of silence around stillbirth," said Cacciatore, a researcher and an assistant professor of death studies at Arizona State University. "There's an implicit veil of shame that covers these women."
Montgomery went over the pregnancy in her mind for months and anguished about what she could have done differently. Why hadn't she gone to the hospital sooner when, during the last days of her pregnancy, Madeleine's kicking became sluggish? Montgomery didn't know it was odd.
An autopsy determined that Madeleine's heart had stopped at 41 weeks and four days, not long before doctors planned to induce labor. The autopsy also found a low level of placenta, meaning she was getting too little nutrition, Montgomery said. And Madeleine had a chromosomal abnormality that doctors told them could have caused the stillbirth.
Montgomery and May say they aren't convinced that they have a full answer, just pieces of the puzzle. But they said they wanted to help other parents.
"We ask people, 'What are your talents,' " Cacciatore said. "And Richard came to me and said, 'My passion is politics, and I don't like how stillbirth is being ignored.' "
The couple has experience in advocacy. May is public affairs director for the Association of Progressive Rental Organizations , and Montgomery is executive director of the Austin Visual Arts Association . As the MISS Foundation's congressional liaisons, they promote federal legislation for more research funding and awareness for stillbirth issues. They want a national registry for stillbirths to discern patterns and possible causes.
U.S. Rep. Peter King, R-N.Y., carried legislation last session to do all of those things, but it didn't pass. King plans to sponsor a similar bill this year, a spokeswoman said.
Cacciatore said she isn't optimistic about its prospects during the recession, but May said he hopes for support from President-elect Barack Obama, who sponsored similar legislation and might help push it.
Research funding is crucial, May said. Federal money for stillbirth research fell from $6 million in the 2006 federal budget year to $5.7 million in 2007, according to Robert Bock, press officer at the Eunice Kennedy Shriver National Institute of Child Health and Human Development .
Montgomery and May said that while they gear up for the new Congress, they are reconciled to having lingering questions about Madeleine's death. "I think we've gotten past needing answers," Montgomery said.
"She's my answer," May said, cuddling the couple's 4-month-old daughter in his arms. Her name is Alaina.