I've found myself today consumed with reading about other people's experiences with stillborn babies. I started looking up information for Aunt Shirley and just kept going and going and going. Today I went visiting teaching and shared my experience of realizing just how much a knowledge of Jesus Christ and his atonement and saving grace has helped me through all this. Her children were loud and playing and crazy...and still I felt a burning inside that told me that what I was sharing was true.
I found a great
article today from Sunday's San Francisco Chronicle that seems to explain things very close to how I'd felt about so much of this. I loved it. I hope you enjoy it too.
THE LOSS
Life changes when you see a pair of pink lines on a pregnancy test strip. If it's good news, your life becomes a 38-week countdown to holding your future, safely swaddled in your arms. You read books, you post sonogram pictures on the fridge, you make plans for a nursery, you put your name on child care center waiting lists.
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You don't plan for the doctor to tell you your future has no heartbeat. You don't plan to deliver a baby who will never open his eyes. You don't plan on coming home with an urn of ashes instead of a bag of diapers.
Before my son died, I had every hope -- and worry -- of being a good mother.
As a 35-year-old single journalist who found herself unexpectedly pregnant, I knew I needed to get the word out to friends and family early on to see how I could pull it off. Within an hour of the first phone call there were eight members of the "tribe" in my kitchen helping me figure it out. "Boo Boo" was christened -- "it" or "baby" didn't seem right -- and the wild ride began. A constant loop of overwhelming questions woke me every morning. How do I do this alone? How does anyone not making six figures pay for child care in this city? How can I raise a third-generation fatherless child? Disposable or cloth?
On my first visit to Dr. Fang, I brought my friend Samantha and we saw the ultrasound of the fuzzy little kidney bean that had taken up residence in my womb. Keeping company with it was the constant worrier camped out in my brain and the unpredictable crier armed with Kleenex and saltines on my couch.
Week 12 I became a believer. My friends Stas and Jason came with me to my 12-week checkup. Dr. Fang took out the Doppler and pressed the microphone to my lower belly to listen for Boo Boo's heartbeat. Tears rolled down my cheeks as the room filled with the whirring "whoosh whoosh whoosh." I had still needed evidence there was something growing in my womb -- the mild queasiness and difficulty in getting my pants zipped weren't enough. Some part of me needed proof that Boo Boo was still in there.
Anna came with me to the 19-week ultrasound and we found out Boo Boo was a boy.
We got to watch him move around a lot, most of which I couldn't feel. He was about the length of my hand. We laughed when Boo Boo swung his arm in what looked like a punch right at the placenta. We watched the four chambers of his heart fill, saw his kidneys and the lobes of his brain. At one point I saw his mouth move.
I finally relaxed and watched myself gradually expand out of my clothes. Boo Boo gave me a wonderful gift. I finally understand why my body was made this way. And it's beautiful.
At 24 weeks, Boo Boo's heart stopped beating.
Then I had to deliver him.
More than 26,000 women each year in the United States, and 4.5 million worldwide will deliver a stillborn baby. The majority will never know why their babies died. Few will be offered adequate guidance on coping with the devastating loss of a child they never got to know.
Searching for answers will provide little solace to many parents because so little research has been done on the causes of stillbirth -- classified by most in the medical community as the death of a fetus at or beyond 20 week's gestation. The efforts of many researchers have been stymied by the lack of standardized methods of reporting stillbirths and the collection of data from hospital to hospital, county to county, state to state. Fetal autopsies -- which are not covered by all insurance companies and have no national protocol -- are not required by law or hospital policy unless foul play is suspected.
But researchers and parents are now beginning to reject the "it wasn't meant to be" response to pregnancy loss, and replacing it with "why is this happening?" and "what we can do about it?"
Frustrated by the way fetal and infant deaths were being analyzed from a clinical point of view at different hospitals in San Francisco, Dr. Ellen Stein, medical director for the county's maternal, child and adolescent health section of the Public Health Department, created an oversight committee of the labor and delivery chiefs from the county's hospitals. They are creating a uniform way to report fetal and infant mortality so that each San Francisco hospital will use the same diagnostic codes and methodology to note the cause of death.
"We have to standardize the methods we use, or we can't compare events within regions or between regions," said Stein. "We have to know how to categorize events before we can count them. Without counting them, we can't do appropriate research studies to understand what is really happening, to know the magnitude of the problem."
The Bay Area Data Collaborative, which Stein formed in 2004 with representatives from all nine Bay Area county health departments to standardize data collection, can now evaluate gestational weeks, cause of death, ethnicity and other relevant details across county lines.
For example, Stein discovered that African Americans in the Bay Area between 1999 and 2001 accounted for only 7.5 percent of births, but a third of fetal-infant deaths.
Before public health officials can begin efforts to decrease those numbers, the quality of the information gathered has to improve.
"Stillbirth has been an extremely under-researched area," said Dr. Uma Reddy, an OB/GYN with the National Institutes of Health. "There is a huge gap in information."
Reddy is heading a five-year, $15 million study on the reporting and collection of stillbirth information at five major U.S. research sites including Salt Lake City, Atlanta and Galveston, Texas. The goal of the research is to prove that standardization of reporting will show stillbirth rates are higher than previously reported and that standardized postmortem, maternal and placental examination protocols will improve diagnoses of stillbirth causes and identify possible risk factors for stillbirth.
But without current research to recommend changes in hospital or diagnostic protocols, parents are still left facing the death of their unborn child without a reason.
When Iowa state Rep. Janet Petersen was nine months pregnant in July 2003, doctors told her that her daughter Grace had died.
"You don't expect something like that to happen," said Petersen. "I did everything by the book and I was perfectly healthy." She was told her daughter died of a true knot in her umbilical cord, but when she tried to find research on the problem, she was shocked at how little information was available.
In 2003, Petersen began her quest to create a national stillbirth registry. Bill 2362, which created a statewide protocol for collecting stillbirth records, passed both Iowa's House and Senate unanimously and was signed into law in 2004. U.S. Sen. Tom Harkin, D-Iowa, secured $900,000 in CDC funding for a stillbirth registry project in Iowa and Atlanta.
Petersen is challenging other state legislators to follow in her footsteps.
"If we don't start collecting information nationwide, it will just take that much longer to have a data pool big enough for researchers to begin uncovering the causes of stillbirth and possibly find ways to prevent them," she said.
CAUSE OF DEATH
When the doctor told me Boo Boo had died, my reporter brain took over. I asked what happened and what I needed to do next. It wasn't until I called a friend to come pick me up and the words "the baby died" came out of my mouth that the mother in me began to realize what the news meant.
Dr. Callen said I had a circumvallate placenta -- which is an uncommon formation of a membranous ring around the placenta's edge -- and the umbilical cord had a peripheral insertion. Neither of which, the doctor said, is usually connected with a fetal death. There was a blood clot in the placenta and she said they would look into whether or not a fall I had at work precipitated Boo Boo's dying. For several days before he died, I noticed he had stopped moving, and while the doctor was doing an ultrasound to find out why, Boo Boo's heart had stopped beating.
The autopsy results weeks later would show that there was no conclusive cause for his death.
I joined the ranks of other bereaved parents who wanted to know why their babies died. Was it something we did? Could we have done something differently? Will it happen if we get pregnant again? Scouring the Internet. Calling doctors. Poring over the autopsy results. Sobbing "why" endlessly.
Being told by almost everyone: Most parents will never know why this happened.
Why not?
"You find out after the fact that there are lots of us that had healthy pregnancies and lost our babies at the end with no answers," said Antoinette Ayers, whose daughter, Maddie, died during labor before she was delivered in July 2002. Ayers believes that the cause of many pregnancy losses isn't unexplainable, it's unexplored.
In December 2002 she founded the International Stillbirth Alliance and in September the nonprofit, co-hosted the first joint conference on stillbirth and sudden infant death syndrome. Nearly 300 researchers, health care workers, counselors and bereaved parents from around the world gathered for three days in Arlington, Va., to explore potential causes and lasting effects of fetal and infant loss in more than 100 panels, presentations and workshops.
Parents gathered in the halls after each session, comparing notes from different panels, often making connections between one researcher's findings and someone's study in another room. Each of them soaking in information, struggling to decipher unfamiliar medical jargon, wondering if they discovered the reason their baby died. Panels on thrombophilia (blood clotting), low blood pressure, infections, brain injuries, cord accidents and possible connections to SIDS caused the biggest buzz. But none offered any definitive answers.
Several panels presented research from the MOMS study -- Maternal Observations and Memories of Stillbirth -- led by Dr. Frederik Froen, visiting lecturer and Fulbright scholar at Harvard Medical School. Of 2,841 stillbirths cases, Froen found that 20 percent were "unexplained" despite adequate autopsies of the placenta and child. The cause of death in 15 percent of all cases were classified as "unknown" because there had been little or no investigation into why the baby had died.
Froen, who has recently studied unexplained stillbirths with the Norwegian Institutes of Public Health, said the United States has among the lowest stillbirth autopsy rates of any developed country. "Here in Boston it is between 20 and 30 percent," he said, adding they are often not performed because many U.S. insurance companies do not cover them. "The more autopsies you do, the more you can determine a cause of death. The risk of recurrence is mainly associated with the same cause of death. If you don't know what caused it the first time, you reduce your possibility to prevent it from happening again."
One study of 644 stillbirths over a 13-year period at an urban hospital in Detroit found that women who had had a stillbirth had a 10 times greater risk of having a subsequent loss.
Dr. Michael Collins of Louisiana's Pregnancy Institute believes that in most cases fetal death doesn't happen suddenly, but is caused over time. He teaches kick counting to his clients, shows them how to use fetal monitors at home and how to send suspicious heart rates to his Blackberry using new software designed by E-Care Solutions.
"It makes sense that when a baby is in distress, their movement slows down to conserve their energy and that the death happens over a matter of days," said Collins, adding that his research shows most stillbirths happen at night, when a mother's blood pressure is lower. He said research has yet to be done on the interaction of the mother and the baby when the mother is sleeping -- something his institute has been working on. "Our research shows that women who have lost babies due to cord accidents are more likely to have another cord accident. If we know something is wrong early enough, we may be able to intervene."
One such case was a subsequent pregnancy of Jan Caruthers, a friend of Janet Petersen's, the state representative from Iowa. Collins was monitoring her pregnancy electronically from a home fetal monitor -- one that she, Petersen and friend Tiffan Yamen had bought in 2001 for the Pregnancy Institute as a tribute to their stillborn daughters. At 34 weeks, Collins, viewing her readout in Louisiana, determined Caruthers, who was in Iowa, was in labor even though she couldn't feel the contractions. She went to the hospital and -- because of complications during labor -- her son, Briggs, was delivered alive by emergency C-section.
But Collins admits that in many cases when distress is detected, especially before the baby is viable outside the womb, there may be nothing that can be done to prevent fetal death.
Froen said he also is researching the use of kick counting in the detection of fetal distress. He questions the veracity of a study published in the Lancet in 1989 that indicated that kick counting showed no beneficial effects.
"When we can show through evidence-based research that kick counting works, that's going to be our next national campaign," said Ayers.
BEREAVEMENT
I'm not sure how I knew what to do next. I've always appreciated the importance of rituals, and within a few hours of getting home from the doctor's office, there was a circle of friends surrounding me while I wept. My friend Drissana brought plaster strips to make the belly cast I had planned to make when I was nine months pregnant. Erin read a poem. Someone else was chanting. Everyone put their hands on me, my belly and my heart. At some point, I named him.
Avery Pullen.
When I was ready, six of them came to the hospital with me and at 9:30 p.m. March 1, 2005, I was admitted. I immediately moved the room around a little and made an altar for Avery where I could see it. Quan Yin for compassion; the pregnant fairy Stas had given me; pieces representing the four directions and a stuffed Eeyore, because he needed to be there.
Part of me was practical and task-oriented during portions of this process. I accepted that this had happened and I knew I needed to birth Avery and let him go. But what was going on in my heart, what is still aching in my soul, has no ready words to describe it. I was in a surreal alternate universe that I never expected.
People told me how strong I was and how in touch I was with my feelings. I didn't feel especially courageous or brave. I was just putting one foot in front of the other, doing what I had to do and expressing exactly what was happening for me at the moment it was happening -- whether it meant laughing, crying or asking the doctors and nurses technical questions. These are traits I have always had, much to the relief or chagrin of my friends and family.
One of the doctors told me most women who go through a stillbirth labor, do it alone or with just their husband/partner. She said it was great to see so many people with me and several others on the nursing staff commented on what a great support group I had. Stas and Samantha, who both happened to be labor coaches, gave me on-the-job training since I never got to go to birthing class. My mom and her partner Jen drove 13 hours straight from Arizona to be there by my side. Anna and Becky ran errands and provided the comic relief.
My son was born on Thursday, March 3, 2005, after more than 24 hours of labor at 1 pound, 7 ounces and 13 inches long. As Dr. Wiggins put him on my chest she said, "It isn't often we get to birth angels here."
He was very long-limbed, with the longest fingers and biggest feet you could imagine. Avery could have been an NBA All-Star or a jazz pianist ... knowing he was a child of mine, he probably could have been both. He was perfect. I cradled him on my breasts and then tucked his small, hairy head under my chin. He smelled exactly the way I imagine all newborns do, powdery sweet. With his bright red lips, he would have been a heartbreaker.
There was never any doubt I would take pictures of him. I asked Anna and Becky to bring disposable cameras and I had a digital. Nor was there a question that I would hold him. Doing both of those things made Avery real, not just a fuzzy image on the screen. He may have been tiny, but he was the biggest thing I have ever done. Giving birth to him, seeing and feeling what my body did, was a precious gift that his death will never erase.
The universe may have taken Avery back before I had a chance to know him, but I do not regret his short visit or the pain of this deep loss. He was the masterpiece he was meant to be.
When Carol Donald went into labor before she reached the delivery room at a 1940s hospital, a nurse pushed her baby back into her womb. As a result, Richard Allen Donald developed a brain hemorrhage, was whisked away after he was born and died a few hours later.
"I was hysterical, I wanted to be with him," she said, adding her doctor finally let her see her son for a brief moment. "I still remember his sweet face." Although Donald, 83 and now living in Concord, has two living children, and fostered more than 100 babies, she regrets not being allowed to hold him, even after he died. "I've never forgotten it," she said.
While many parents cling to the one Polaroid photo the hospital takes of each child, some find it hard to look in the hospitals' keepsake box of handprints or hair, and others choose never to see or touch their babies. Each parent's process is unique, but many hospitals and staffs are untrained and inexperienced in how to help them through the traumatic experience.
Kathleen Skipper, an obstetrics nurse at Millard Fillmore Suburban Hospital in Williamsville, N.Y. started a perinatal bereavement group in 1991 to help parents after pregnancy loss, miscarriage, stillbirth and newborn deaths. She also wanted to change the way hospital staff handled such losses.
When her first son, Jimmie, was born in 1966 with anencephaly, a disorder in which the brain does not form, she was told she shouldn't hold or see him. "He died alone in a corner of the nursery 12 hours after he was born without his mother and father there to love him into death," she said, adding that although one nurse was kind enough to tell her he had a beautiful face and body, not seeing him haunts her to this day. Her husband was told by their doctor not to let her dwell on the loss, to get her pregnant again as soon as was physically possible and to get on with their lives.
"In those days, you were told grieving wasn't normal, which just made it worse," she said. "I can tell you now that it's better to grieve than to bury your grief alive." While some hospitals have revised post-delivery protocol for stillborn and perinatal births, others in the medical community are hesitant to change their practices, not knowing the long-term impact on the recovery of parents.
Out of 2,841 women who reported a stillbirth in the MOMS study, 90 percent said they held their stillborn babies -- only five women said they regretted it. Of the 10 percent who didn't hold their child, 77 percent regretted not doing so. The MOMS study is the first study of such magnitude and Froen and others hope it will begin to change the protocol for how hospitals approach the parental grieving process.
Dr. Ewan Kelly, a hospital chaplain and lecturer in Practical Theology at the University of Edinburgh, Scotland, has worked with parents to co-create blessing or naming rituals during their hospital stay, as well as on funerals or memorial services in the days and months that follow. Personalized rituals, he believes, are essential ways that parents create memories of their child to hold onto as they grieve and heal.
Avery Jadyn Wong's heart stopped beating at 28 weeks inside her mother Margaret's womb in October. The Wongs, who live in San Francisco, took a couple of days to process what had happened after hearing the news from their doctor. The night before they went to the hospital for the induction, their families gathered, cried and consoled one another -- a show of emotion they say was uncommon for them. They cherish the photos from their daughter's birth and had a slide show at her funeral. Every night, Margaret Wong writes letters to her daughter about her day.
Gerome Lecompte-Famous was born at 24 weeks when his mother, Gabriele, went into preterm labor. He lived for an hour and she and his father, Mark, held him while he died. At the memorial service, family and friends read letters to Gerome that his parents had asked them to write. They mounted those letters in a special keepsake book for him. The San Francisco couple planted a tree Mark's mother had given them at the service.
Heather and David Brame's daughter, Donnalee, was a few days past full-term when doctors discovered she had died in January 2005. For months after the loss, the Brames kept a tribute to her in her crib, an altar of sorts they shared with visitors. They took a road trip to spend time together, away from their responsibilities, to focus on themselves. After months of worrying what might go wrong with their second pregnancy, their son, Davoud Mansour Brame, was born alive and well at Kaiser in San Francisco.
They all created memories. Memories of children only they knew. And each image, each card, each word is a tribute to their children. A piece of evidence that they were real.
LIFE AFTER STILLBIRTH
There is no guide for how to recover from delivering a baby that never took a breath. Or how to take the news that we are miscarrying. Or what to do when we go into labor long before our baby will be able to survive outside the safety of our womb. This is uncharted territory. And unacknowledged in the thousands of how-to books that tell us how to stumble through birth and the first year of life.
Those of us who have had a pregnancy loss struggle with being around pregnant women or babies. We return to work or to our routines. We try to explain to our loved ones why we can't or aren't ready to "move on." Most of us obsess about getting pregnant again.
I find I need to meet other members of this secret club. I want to hear how other parents handled their news and the delivery, whether they had a funeral or a memorial, whether or not they took pictures or wished they had or hadn't. I go to support group meetings and listen with compassion to women who gave birth with just their partner present, did not take pictures or hold their babies, have family or friends who don't understand why the loss is so profound and avoid close friends who were pregnant -- things that would have made the wound of losing Avery so much more painful for me.
And with each story, I marvel at how -- with the help of my family and friends -- I managed to do everything that, in hindsight, I would have wanted to do without having any external direction for how to handle a stillbirth: Doing a blessing ritual after I got the news, having the tribe at the hospital, taking pictures, holding Avery until I was ready to let his body go, having my friends hold him too, getting the silver charms made of his hand and foot prints, talking about the loss with my dear friend, Trish, who was just two weeks apart from me in her pregnancy. I wish other mothers and fathers could have someone dispensing suggestions or guidance at a time when the only thing they can think about is what they have lost.
One year ago I held Avery's tiny hand in my fingers and felt his slick hair on my cheek. I still ache when things get quiet or when a baby cries. I stop to listen. On his due date, instead of delivering a baby, I delivered a small book about him for my friends and family. On the first anniversary of his death, I wrote this article to share what I had learned about this mysterious and earth-shattering kind of loss. Next year, I hope to share the stories of other mothers and fathers and their life after stillbirth. I also hope -- like most mothers I have met -- to get pregnant again and this time hold a squirming baby in my arms.
The road I am on is my son's gift to me. The least I can do as his mother is to continue on this journey and see where it takes me.
THE
FACTS
Nationally
One in every 150 births results in stillbirth. Many researchers believe the numbers may be higher due to the lack of a consistent standard of reporting.
Fifteen percent of all known pregnancies end in miscarriage. The number of actual miscarriages is thought to be higher because many may occur before a woman knows she is pregnant.
While the number of stillbirths has decreased 18 percent between 1985 and 2002 nationwide, the drop was far below the 34 percent reduction in infant mortality rates during the same period. (Stillbirth and infant death rates are often viewed together.)
(Statistics from National Institutes of Health.)
In 2004, the Centers for Disease Control and Prevention, (CDC), reported that in the United States, the number of documented stillbirths is roughly equal to that of all infant deaths during the first year of life.
Statewide (2003)
In California, there were 2,929 reported stillbirths -- the highest percentage (23.4) were to mothers age 30 to 34.
"Unspecified cause" counted for 26.2 percent (767) of deaths and was ranked as one of the leading causes.
Forty-one percent of fetal deaths happened between 20 and 28 week's gestation.
Prematurity and disorders related to short gestation were responsible for 41 percent of deaths of babies less than 28 days old.
(All statewide statistics from the Department of Health Services, State of California.)
In the Bay Area (1999-2001)
There were 287,044 live births and 2,210 fetal-infant deaths in the nine Bay Area counties.
Alameda had the highest fetal-infant mortality rate of 9.1 per 1,000 births (still and live). Marin had the lowest at 5.6 per 1,000. San Francisco was near the regional mean of 7.7 (124) with 7.3 per 1,000.
African Americans account for 7.5 percent of births in the Bay Area, but a third of fetal-infant deaths, with a fetal-infant mortality rate of 16.2 per 1,000 -- twice as high as all other race categories. The CDC has found similar statistics nationwide, with the risk of late-term stillbirth rates two-thirds higher in the African American population than in other racial and ethnic groups.
(Bay Area statistics from the Bay Area Data Collaborative.)
-- S.P.
Stillbirth Resources
SUPPORT GROUPS
HAND of the Peninsula -- Helping After Neonatal Death
Bimonthly support group, detailed online resources and newsletter; (650) 367-6993,
www.handsupport.org. California HAND,
www.handonline.org.
SAND - Support After Neonatal Death
Local support groups in San Francisco; (415) 282-7330. Grupo Amparo (Spanish); (415) 764-0211. In the East Bay; (510) 204-1571, or e-mail
sandinfo@aol.com.
Beyond Choice
Bi-monthly support group for pregnancies terminated due to genetic abnormalities; Call Jan Bourguignon; (510) 752-6755. In San Francisco, call Life After Loss; (415) 600-2628.
Compassionate Friends
National and local groups for families who have lost a child of any age; (877) 969-0010,
www.compassionatefriends.com.
A Heartbreaking Choice
Resources, stories and support for those who have terminated pregnancies due to genetic abnormalities,
www.heartbreakingchoice.com.
Pregnancy After Loss
San Francisco-based supportgroup. Call Cherie Golant; (415) 600-2229, e-mail,
cpmcnewborn@sutterhealth.org.
ORGANIZATIONS
International Stillbirth Alliance
Nonprofit coalition of stillbirth groups,
www.stillbirthalliance.org.
First Candle/SIDS Alliance
National network of health care providers, parents, caregivers and researchers working on infant mortality. Online resources, links to research and bereavement guidelines; (800) 221-7437,
www.firstcandle.org.
M.I.S.S. Foundation
Nonprofit organization for parents who have lost a child; (623) 979-1000,
www.missfoundation.org.
Hygeia Foundation
Institute for perinatal loss and bereavement,
www.hygeia.org.
March of Dimes
Launched five-year campaign to expand research, health education and services related to preterm birth,
www.marchofdimes.com.
The Missing Angel Foundation
Stillbirth education and awareness; online poetry and photo gallery, chat room,
www.missingangel.org.
The Centering Corporation
Grief resources, books and materials; (402) 553-1200,
www.centering.org.
EVENTS
When a Child Dies: Conference and Retreat, Arizona State University, May 31-June 4,
www.missfoundation.org.
9th International SIDS Conference, featuring stillbirth sessions, Yokohama, Japan, June 1 to 4,
www.sids.gr.jp/invi.
Walk to Remember -- pregnancy and infant loss, Alta Bates Hospital, Oakland, 2nd Thursday of Oct., (510) 204-1762.
Pregnancy and Infant Loss Remembrance Day
Oct. 15th, candle lighting and other events,
www.october15th.com.
Worldwide Candle lighting for a child who has died
Second Sunday in Dec., (877) 969-0010,
www.compassionatefriends.com.
-- S.P.
E-mail Suzanne Pullen at
spullen@sfchronicle.com.To listen to a podcast with Suzanne Pullen, go to
www.sfgate.com/blogs/podcasts.
