Article/Bill for Mamie and Others

TUESDAY, JULY 7, 2009 AT 10:14AM POSTED IN FAMILYEDIT Please pass this along to anyone you think it will help. Let’s take a stand for our babies. Click here to read THIS STORY Even Doctors Avoid Talking About Stillbirth By Alan Goldenbach Washington Post Staff Writer Tuesday, July 7, 2009 About a month after our son died, my wife and I made our first visit back to her obstetrician's office hoping to get answers to some of the questions that haunted us. We had already learned why he died a day before he was supposed to be born; an autopsy showed his umbilical cord had become knotted. What we were left with was a helpless feeling, exacerbated by the fact that our son's death blindsided us. Over the previous year, we had absorbed countless pieces of pregnancy literature and fiercely adhered to our obstetrician's guidelines for a healthy pregnancy. While we knew that stillbirth is possible in every pregnancy, no book nor our doctor ever mentioned the term. So we asked our doctor: "Why not?" "Pregnancy is a happy time," she told us sheepishly, from behind her desk. "Nobody wants to hear anything about something bad, much less death." We left her office with a sense of betrayal and frustration. We had done a little homework since our son's death and were stunned to find how common cases like ours are -- yet how rarely people talk about them. There are about 26,000 stillbirths annually in the United States -- one in about every 160 pregnancies, according to the Centers for Disease Control and Prevention. That is 10 times the number of deaths attributed to sudden infant death syndrome, which has been identified as a key public health issue, and four times the incidence rate of Down syndrome, for which prenatal testing has become almost ritual. Domestically, there are 2 1/2 times more stillbirths annually than deaths from AIDS. Several doctors told us that they don't see any point in discussing stillbirth, that it's a catch-all term for an event, and one that is frequently unexplained. If doctors knew the causes of stillbirth or its telltale signs, they say, they'd warn parents -- and take preventive action. But if you don't talk about an issue, you'll never learn more about it. Take SIDS: Awareness campaigns triggered research that showed babies were suffocating when they slept facedown. Consequently, such measures as ensuring that babies sleep on their backs and on firm mattresses have become fundamental orders for parents of newborns. What if similar research had been done on stillbirths? Might increased fetal monitoring during the final trimester have spotted my son's tangled umbilical cord? While we marvel at sonograms and their ability to show a fetal heart beating, they are as yet unable to detect an umbilical cord in utero. We can't know if improved technology or more stringent standards of monitoring can lower stillbirth rates unless we do the research. "It's the trade-off -- you are going to frighten a lot of people" by discussing stillbirth, said Ruth C. Fretts, an assistant professor of obstetrics and gynecology at Harvard Medical School and chair of the scientific committee for the International Stillbirth Alliance, a nonprofit collaborative that seeks to increase the understanding and prevention of stillbirth. "It seems like a lot of intervention. We spend about an hour during the first visit talking about screening for Down syndrome. We don't spend any time at the end talking about [stillbirth] . . . . We haven't framed the question appropriately enough to draw attention to stillbirth. People didn't count them [as deaths] for so long." Jason Collins, a Louisiana obstetrician who heads the nonprofit Pregnancy Institute, which promotes improved fetal monitoring for full-term births, says there's little talk about stillbirth "because doctors are afraid of the repercussions." According to Fretts's research, the leading cause of fetal death after 28 weeks is an unexplained source, dwarfing such culprits as fetal malnutrition and placental abruption. In other words, the most common result after a stillbirth is a doctor telling grieving parents, "I don't have an answer for you." Several doctors told us privately that many OB-GYNs fear charges of malpractice following a stillbirth, leading them to avoid citing a cause of death. Discussing stillbirth is made all the more difficult by the term's lack of clarity. While the clinical definition in the United States for stillbirth is the death of a fetus after 20 weeks of gestation or weighing 350 grams or more if the age is unknown, I can't count the number of times I heard my son's death referred to as a miscarriage, which is usually defined as occurring before 20 weeks and seemed to us to diminish the loss of a baby at full term. According to the World Health Organization, stillbirth rates in the United States are greater than those of every European nation, Canada, Australia, Japan and Singapore, yet some experts say it is inappropriate to compare them because there is no single definition of the term. For example, in Sweden, a stillbirth is a fetal death after 28 weeks. Other nations use a 16-week definition. "You really can't compare stillbirth rates in certain countries," said Wes Duke, a CDC medical officer who has spearheaded a program in metropolitan Atlanta to improve data collection of stillbirths for the purpose of determining causes. "It's really apples and oranges." While there is disagreement over the meaning of the term "stillbirth" at the administrative level, a few people at the grass-roots level are determined to raise awareness by talking about it. Jeanine McGrath, a registered nurse at Holy Cross Hospital in Silver Spring who has been serving on the hospital's Perinatal Loss Committee for 12 years, remembers meeting a woman who had twins. One was stillborn, and the woman's inability to come to terms with her situation inspired McGrath. "She told me, 'I don't know how to feel,' " McGrath said. " 'Everyone says I should be happy because I have a baby, but I also have a baby who died.' " In January 2006, McGrath launched a weekly perinatal loss support group at Holy Cross. She said that each group averages about a half-dozen families and that by the end of an eight-to-10-week session, people want to discuss the death of their baby. "I start and end the group the same way every time [by telling everyone that] you are very brave," McGrath said. "Why in the heck would you want to cry in front of strangers?" McGrath has not had trouble filling each session. She said there are about 125 to 150 stillbirths annually just at Holy Cross. She said she also mails invitations to families who suffer stillbirths at other Washington area hospitals. "As a society, we're told just to deal," McGrath said. "There's this idea that you can just have another one, that they're disposable. "We have a very limited ritual around death. In this country, it's 'Have funeral and get it over with and move on.' But when it's a baby, we don't even have a word for what to call it." McGrath said she has heard countless times in her support group from parents who received no guidance from their doctors about stillbirth. One woman, she said, told a story about receiving a hand-written note from her veterinarian following the death of her dog. "But when her baby died, the woman heard nothing from her doctor," McGrath said. There was another woman who called her obstetrician's office after the stillbirth of her daughter and heard the following prompts: "Press 1 to make an appointment, press 2 to make a payment, press 3 for prescriptions." "I have a dead baby," the woman told McGrath's support group. "Which button do I push?" McGrath said part of the problem stems from large obstetrics practices, which encourage women to visit each doctor in case that one is on call the day of delivery. It becomes a classic case of groupthink, where none of the doctors wants to deviate from the tried-and-true workflow. "For many of the [medical] groups, they're huge," McGrath said. "It's seven or eight doctors and they all want to see you. Where is it in the prenatal plan? Somebody is going to talk about it, but they just expect someone else to do it." Now someone is trying to talk about stillbirth, and it's a most unlikely source: Congress. Last June, then-Sen. Barack Obama introduced the Preventing Stillbirth and SUID Act of 2008, but it was unable to gain much traction. ("SUID" stands for "sudden unexpected infant death.") Sen. Frank R. Lautenberg (D-N.J.) has picked up the cause and is crafting similar legislation that, according to sources familiar with the bill, will be brought to the Senate floor before the August recess. "We need to know more about stillbirths to help increase awareness and prevention," Lautenberg said. "We are crafting legislation to improve data collection so we can better understand what's causing stillbirths and help parents looking for answers." The bill, which is more policy- and data-oriented than research-driven, will expand upon registries of stillbirths already in place in Iowa and metropolitan Atlanta. Lautenberg and the bill's other sponsors hope to have as many as a dozen states participating in the registry and providing a standard protocol for data collection following each stillbirth. Among the bill's other provisions is a campaign to increase public awareness and grief support services. "This bill will at least raise the awareness," said Fretts, who has consulted with Lautenberg's staff on this bill, "and that's a big start." My wife and I could have used that. Comments: goldenbacha@washpost.com.

Cissy Adams - Sarah & Taylor I am so proud of you both for researching sudden infant death. We do need to have public awareness and more grief support groups. I can't get over the statistics of SUID "sudden unexpected infant death." One child in one hundred sixty births -- unbelieveable. I hope that the SUID Act of 2008 represented by Senator Lautenberg is passed in August. Thank you for having your friend take pictures of Mamie. I look at it everyday -- many times. I love you both very much. It is such a blessing to know that Mamie is with our Lord. Cissy Adams - Mima

July 7, 2009 - 7:29 pmAmanda - I lost our baby boy, Sullivan, June 22, 2009 at 23 weeks. There are no words for our loss. Please know I am thinking of you and praying for you during this time. Amanda

July 7, 2009 - 7:39 pmShawna - I was going to bring this you your attention when I read it in the Post...I'll make sure to start following this for you guys and keep you updated on its progress. Love you both!

July 7, 2009 - 11:09 pmDebbie Pennington - What a beautiful baby! My heart breaks for you both. Just wanted you both to know that you are in my prayers. May God give you both the strength that you need to make it thru each day.