Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

Hi Everyone-

I am writing you to ask for you to take 5 minutes today to support a very important piece of stillbirth/SIDS legislation that was introduced into Congress yesterday. As you may know, I traveled to DC twice in the last two years to advocate for stillbirth legislation -- some of you supported me in making those trips (thank you!!!). As a result of a visit I made (along with three other mothers and a doctor from First Candle) with a staffer from Obama's office (before he was president), a piece of legislation was drafted by his office. He became President before it could get any traction, but he hand-delivered it to Sen. Lautenberg and asked him to take it on. That revised bill was finally introduced yesterday, along with a companion bill in the House.

On behalf of the hundreds of families I have written about over the last four years, and in remembrance of Avery, I ask you to contact your Congressional Representatives (a total of three emails and/or phone calls) to implore them to support the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 and become co-sponsors. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. Below are links:-To find out the contact info of your Rep/Senators by typing in your zip code. -A fact sheet about the bills-A sample letter you can cut and paste in an email to make it simple. Including your own story is also helpful!

In order for this bill to have a chance at passing, we need as many co-sponsors as possible. That means getting support from all over the country, so I am also asking you to email this to anyone else you think can help and/or post this on your web/social networking site. You can also just post the link to First Candle www.firstcandle.org.

Please take 5 minutes to show your support for the bill right now...early support is key at getting momentum going.

Thank you for reading this...and for considering my request. I don't usually ask people to take political action and I sometimes feel uncomfortable when others ask me to do so, so I can understand if you would rather not get involved. But if you want to and don't have the time today, please consider doing it as soon as you can.

With deep gratitude, Suzanne


Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

First Candle is pleased to announce that the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 was filed July 14 by Senator Frank Lautenberg, D-NJ. A companion bill was filed in the House by Frank Pallone, Jr., D-NJ-6. This bill would improve the collection of critical data to determine the causes of stillbirth SIDS and SUID, increase education and awareness about how to prevent these tragedies in the future and expand support services for families who have experienced a stillbirth, SIDS or SUID loss.

Every year there are more than 25,000 stillbirths in the United States. For more than half these deaths there is no known cause, leaving parents with more questions than answers as to why the baby died. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. In addition, there are more than 4,600 sudden unexpected infant deaths each year (including SIDS) and 200 sudden unexpected deaths of children between the ages of one and four. This bill encourages states to complete scene investigations to better understand why these children died, establishes a national database to track these deaths and identify risk factors to prevent them in the future, supports more comprehensive reviews and creates a national public awareness campaign to educate parents and caregivers.

We hope you will join us in supporting this legislation.

Please help by contacting your representative in the House and two Senators within the next week, urging them to co-sponsor this important bill.

The more co-sponsors the bill gets, the more likely it is to pass quickly through the House and Senate.

Participating in First Candle’s letter-writing campaign is easy!

Visit www.house.gov to get contact information for the Congressman in your District. You will need your 9-digit zip code. If you do not know your 4 digit extension, you can get it at http://www.z2systems.com/nps//servlet/DisplayLink?orgId=fc&emailId=306112&linkId=2591&targetUrl=http://zip4.usps.com/zip4/welcome.jsp.
You will then be able link directly to your Representative’s website.

Visit www.senate.gov to get contact information for your states two Senators. Simply select your state from the drop down menu to connect to your Senators’ websites.

We encourage you to call your representatives directly, or set up an appointment to meet with them face-to-face. Writing a letter or sending an email can be effective as well. Emails can be sent directly through your representatives’ websites.

We have provided a Fact Sheet about the bill, as well as a sample letter to help guide you.
Whether you are writing a letter or speaking with your representatives directly, be sure to include your personal story.

First Candle would love to receive a copy of your letter or an email detailing your conversation with your representatives for our files.

Members of Congress rely on input from their constituents to help them better understand what issues are important to those they serve. Help give our babies a voice!

Please feel free to contact Laura Reno, 800.221.7437 or laura.reno@firstcandle.org with any questions you may have.

Saving Babies' Lives Report - Sands UK

Sands UK

Countdown to Parliament
28.02.09

On Wednesday 4th March we will be presenting our Saving Babies' Lives report which will highlight why we believe that in many cases the devastating impact of the death of a baby on the parents, their families and friends could be prevented.

The overriding message from Sands and the thousands of parents who are supporting the Why17? campaign is that the deaths of 17 babies a day in the UK is totally unacceptable. What we want to see is a clear acknowledgement of the seriousness and extent of the problem and a real, collaborative commitment to address these individual tragedies as a matter of urgency and priority.

The Why 17? campaign parliamentary launch, is an important event in the Sands calendar and will be hosted by Anne Milton MP, between 4pm and 6pm at the House of Commons.
This will give us the opportunity to raise awareness of Sands amongst key parliamentarians, as well as to present our Saving Babies’ Lives Report 2009. This new Report, being published and launched on 4th March calls for a co-ordinated, national strategy to tackle stillbirths and neonatal deaths, and the political will to prioritise the lives of babies as an urgent health issue.

There are many people who have been instrumental to the Why17? campaign. To all those families, staff, volunteers and supporters of Sands who have backed the Why17? campaign since its inception, you are the driving force behind the campaign and our thanks go out to each and every one of you.

Together we can make a difference.

My First Son, a Pure Memory

By DAVID HLAVSA
Published: September 19, 2008

HAVING waited until we were in our 30s to start a family, my wife and I were having trouble conceiving, leading to sperm tests, hormone shots and other extraordinary measures.

Over many months, the process of conception became so technical that when Lisa told me she was at last pregnant, I found it hard to know what to credit. After the first ultrasound, she came home with a black-and-white picture of a tiny curled-up creature. We put it on the refrigerator: my son, the lima bean.

At 20 weeks, we went in together for the second ultrasound. The technician made small talk and popped his gum as he dimmed the lights. Lisa lay back on the table. I shifted in my seat, jammed my hands into my pockets, and stretched out my legs like a teenager settling in to watch a movie. As the technician slid the paddle around on Lisa’s belly, the image on the computer screen wheeled, dipped and blurred.

Finally my son’s image popped into focus. Arms and legs folded, he seemed to be resting on his back, as if lying on the bottom of a pool, waiting to spring to the surface.

I said, “Cool.”

The technician muttered something, hit a button to freeze the image and walked briskly out of the room.

A few minutes later, in walked a small man wearing a rumpled white coat and steel-rimmed glasses, his bow tie askew. He shut the door behind him.

I don’t remember exactly what he said; he looked as if someone had left him out in the rain. What we had taken for a frozen image, he explained, was in fact absolute stillness.

We still refer to the man as Doctor Death, perpetually forlorn, always breaking bad news. They keep him in a closet. (A year later, pregnant with our second son, Benjamin, my wife turned a corner at the hospital and saw him at a nurses’ station; she did an abrupt, involuntary about-face.)

After Doctor Death left, our midwife arrived to explain that we had a decision to make. Did we want to schedule a D and C or induce labor? Her language was very plain, but it took a while for me to understand what she was really asking: Did we want the pregnancy to end in a surgical procedure in the outpatient clinic, or in the maternity ward as a stillbirth? We asked whether there were medical advantages or disadvantages to either choice. She told us it was simply a matter of preference. No hurry. Let us know. More

Information from the National Stillbirth Society

The body of evidence is growing that fetal heartbeat monitoring is an effective tool in identifying signs of a potential stillbirth before it has a chance to occur. It is the next step up from Kick Counting and looks at the baby's heartbeat in cases where the potential for loss is above average, possibly due to an earlier stillbirth. (Go to our site, www.protectyourpregnancy.com, and click on the link in the last paragraph for a pamphlet explaining the procedure available on an experimental basis from The Pregnancy Institute.)

Next go to http://www.nbc11.com/video/17479363/index.html# to see a newscast feature from NBC Channel 11 San Francisco. It is an interview with a stillbirth mother who, having lost a daughter a year ago, is using a home monitor to safeguard her current pregnancy. After testing she sends the results via the Internet to The Pregnancy Institute where they're reviewed. She is called if the printout suggest her baby is in any distress. For infomation you can email Dr. Jason Collins at haydel1@bellsouth.net.

Richard K. Olsen
Founder & Executive Director
The National Stillbirth Society
www.stillnomore.org

A Mother's Meditation on Loss

AN EXACT REPLICA OF A FIGMENT OF MY IMAGINATION
A Memoir
By Elizabeth McCracken
Little, Brown. 184 pp. $19.99

Some friends and I used to call ourselves "The Dead Babies Club." We would meet for brunch and talk about our losses -- miscarriages, stillbirths, terminations after amnios revealed acute abnormalities. We may have been a grief-stricken lot, but we weren't going to be a silent one: We wanted to be seen, to be acknowledged, to mark these events that didn't exactly make us mothers, but made us . . . something. And so, we were willfully conspicuous, overly loud. Because we knew: No one wants to hear about your dead baby.

Elizabeth McCracken knows that, too. That's why, in her lovely, crystalline meditation on the nature of grief, motherhood, marriage and France -- a memoir occasioned by the stillbirth of her first son -- she opens with a quip: "Once upon a time, before I knew anything about the subject, a woman told me that I should write a book about the lighter side of losing a child." See, she seems to be saying, this won't be so bad. What's more, she reassures us, a healthy infant lies on her lap as she writes.

I hope those signposts are enough to ameliorate readers' aversion to the subject matter, the excuse that the book isn't for them unless they, too, have borne a dead child. After all, you don't have to be an alcoholic to love Caroline Knapp's "Drinking: A Love Story." Nor do you have to have lost your jaw to cancer to appreciate Lucy Grealy's "Autobiography of a Face." The best memoirs transcend their particulars, offer a fresh look at the bumpy terrain of sorrow, love, youthful folly, aged folly, resilience and selfhood. McCracken's is one of those, and it would be a shame to pass it by because it strikes at one's deepest fears.

The dead baby has a name, by the way: He is Pudding, one of those goofy place-holders you give a fetus after seeing its inscrutable shadow on an ultrasound screen. McCracken, author of the wonderfully weird novel "The Giant's House," tells his story, and hers, with heart and wit, but amazingly little self-pity. Like any woman who loses a child -- say, to a random comet that drops from the sky -- she strafes herself with self-blame. Our bodies, ourselves, our fault, right? Eventually, she displaces that recrimination onto the entire country of France, where she and her husband, Edward, led a classic boho writer's life before Pudding's death. Understandably, she swears she'll never go back. I imagine she will even shun French dressing, french fries, French braids. It seems a reasonable and healthy choice. More

Stillborn baby given proper funeral service by area pastor

Stillborn baby given proper funeral service by area pastor
By ANNYSA JOHNSON
Posted: Aug. 19, 2008

The Rev. Debra Trakel of St. James Episcopal Church prayed for his eternal life, and a dozen strangers mourned him.

Then Bernie Schroedl, owner of Good Hope Cemetery at S. 46th St. and W. Cold Spring Road, lifted the tiny white box in which Michael’s body lay and placed it in the earth.

Michael Gabriel was born still on July 4 and left unclaimed at a local hospital. As such, he is consigned to a pauper’s grave. But Trakel and the members of two area churches made sure he did not go there alone.

“We come together as a community to claim this child for God,” said Trakel, who has volunteered her prayers at 66 funerals for those abandoned or forgotten in Milwaukee County over the last four years.

Tuesday’s was her first service for a child.

“No one should be buried alone,” she said.

Trakel began her funeral ministry in 2004 after reading a newspaper article about a homeless man who died of exposure in a parked van.

Her own church ministers to the homeless, feeding as many as 300 people a day, she said. But she realized that she’d never pondered the question: What happens to them when they die?
What happens, she said, is that the county arranges for their burial, but no service. In most cases, family or friends come forward to remember their dead. But there are always those who have no one.

It is for them that Trakel gathers, with members of St. James in Milwaukee and Trinity Episcopal Church in Wauwatosa, to pray at the graveside.

They gathered Tuesday around the tiny white box adorned with a single stem of black-eyed Susans. Many of the people wept as Trakel reflected on this life unlived. He had no legal name, but they called him Michael Gabriel, from the Hebrew words for “who is like God” and “man of God.”

“This child, the perfect innocent, is with God,” Trakel said. “Where else could he possibly be?”
Joanne Oliver of Trinity, who buried her own newborn son 27 years ago, struggled through tears to recite the Episcopal Prayer at the burial of a child.

Schroedl lifted the box into the grave and, on his knees, shoveled the dirt inside.

Michael Gabriel’s name will be inscribed in a plaque at St. James Church, 833 W. Wisconsin Ave., along with all the other indigent Milwaukee residents whose funerals Trakel has presided over.
Trakel knows there are people who will judge this child’s mother, but she will not.

“My belief is there is a mother out there who is grieving, who for some reason — whether emotional or financial — couldn’t handle the burial of this child,” Trakel said.

“My hope is that she knows her child was buried well, by people who shed tears for him, people for whom his birth and death mattered.”

MISS Foundation Update

A message from MISS Foundation Legislative Liaisons, Richard May and Kelli Montgomery re: Stillbirth Collaborative Research Network‏

Dear Friends of the MISS Foundation,

The following is an update on both the stillbirth research, the politics regarding the appropriations for stillbirth research through the NICHD and the NIH and the grassroots advocacy for MISS members to execute to help address stillbirths in America.

Regarding the Stillbirth Collaborative Research Network pioneering five-year research study on stillbirths, I recently spoke with the lead research scientist Dr. Uma Reddy and have prepared an update on the status of their research.

The 500 stillbirths necessary for the study is about to be complete. As a consequence, the SCRN will need two more years and funding to complete the analysis from the 500 stillbirths researched.

They have already received a small funding extension as the appropriations from NICHD has been spent from the 2002 $3 million appropriations. The stillbirth research will help determine how stillbirths are reported, to find out better ways to determine the cause, and, better yet, to find better ways to prevent future stillbirths.

The research has also prompted the necessity and funding to:
1. Complete the analysis from the current study.
2. Conduct a follow up study from the mothers and parents of the stillbirths regarding their next pregnancy and/or their psychological state from their stillbirth and the best ways to address both.
3. Conduct a comprehensive study of 10,000 women in their first pregnancies to better predict the stillbirth possibility and/or risks of stillbirths.

Regarding the politics of stillbirth appropriations, the following is generated from a series of conversations with congressional appropriations staff members.

In 2007, the NIH Appropriations bills (both Senate and House) inserted legislative language directing the National Institute of Health (NIH) through the National Institute of Child Health & Human Development (NICHD) Agency to dedicate funds to continue the research and analysis regarding stillbirths in America. The language was inserted, in part, due to the great grassroots advocacy from MISS members throughout America supporting further stillbirth research appropriations from the U.S. Congress. The problem, though, is that President Bush vetoed the bill and threatened the veto again this year forcing Congress to pass a continuing resolution to appropriate the NIH and NICHD at the same levels as 2006.

Therefore, the congressional directive was never enacted and the stillbirth research is coming to a close needing funds for the next level of research,analysis and action. We are waiting until next year to put the pressure on Congress through the MISS membership and grassroots advocacy when we have a President who is much more sympathetic to the stillbirth concerns. Both Sen. McCain and Sen. Obama have expressed their public desire and/or action in supporting such research and not vetoing the appropriations thereof.

In the meantime, we need the commitment of all of those Congress members running for re-election to support the continued research and analysis of this pioneering study. We need all MISS members to contact their U.S. Senators and Congress members NOW during the upcoming election season asking for their support to insert NIH/NICHD appropriations directive language supporting the continued funding of the Stillbirth Research Collaborative Network's research, analysis and recommendations.


********************************************


Here are the key points in a sample letter that you may use or refer to:

Dear Senator/Congress Member,

I am your constituent requesting your support for NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's continued stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued SCRN's Stillbirth Research Project.

Stillbirths are the number one cause of infant deaths in America. According to the Bureau of Vital Statistics and the Center for Disease Control, stillbirths account for 25,000 - 30,000 infant deaths in America every year. Stillbirths account for 10 times the number of deaths than SIDS yet stillbirths are still unknown, undocumented and not properly addressed by the medical community or our public health system in America. In 2003, Congress appropriated a $3 million pioneering stillbirth study by the Stillbirth Collaborative Research Network through the NICHD under the NIH. Now, that study has been completed and Congress needs to address its follow-up and further appropriations to analyze and address the research conclusions. Therefore, as your constituent, I am asking you to support the further and continued NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued stillbirth research and analysis.

As a grieving parent whose family has suffered a tremendous loss through stillbirth, I await your response to help research and prevent the number one killer of our children in America.

Thank you on behalf of the MISS Foundation,

Name

Address (to prove you are a constituent)

Phone Number

'No stillbirth link' to Caesarean

Having a Caesarean does not raise the risk of a stillbirth in a subsequent pregnancy, a study has found.

The University of Calgary study contradicts previous research which suggested an increased risk.

The study suggests a mother's obesity - not whether she has a Caesarean - may instead be the key factor.

The study, which appears in the journal BJOG, suggests that previous research has failed to take this factor properly into account.

Our study strongly suggests that previous Caesarean section does not increase the risk of stillbirth in subsequent pregnancies

However, health professionals advise woman not to opt for a Caesarean lightly, as it is a major surgical procedure, with a risk of complications.

Researcher Dr Stephen Wood said the finding was particularly important as the number of Caesareans had increased in recent years.

He said obesity had been consistently linked to both Caesareans and stillbirths, but it had proved difficult to tease out its independent effect on each.

Confounding factors
The Calgary study examined 157,029 second births, and took potentially confounding factors, such as maternal weight, into consideration.

Once they had done that they found that, among women who had previously had a Caesarean, the stillbirth rate was 2.1 per 1,000, compared with 1.6 per 1,000 in women who had no Caesarean history - not a statistically significant difference.

The researchers admit that they were not able to completely account for maternal weight, but had done so far more than previous research.

Dr Wood said: "Our study strongly suggests that previous Caesarean section does not increase the risk of stillbirth in subsequent pregnancies.

"Although previous research has made a link between the two, it is likely that maternal obesity played a part as it was not controlled for."

Professor Philip Steer, editor-in-chief of BJOG, said: "Caesarean section rates are increasing across the developed world and the increase in risks for subsequent pregnancies have been well-documented.

"The increase in stillbirth risk previously reported was especially concerning, so it is somewhat reassuring that the study by Dr Wood and his team suggests that this may have been due to the confounding factor of maternal obesity."

Link to story

Stillbirth rate not coming down

The number of stillbirths remains stubbornly high, a report says.

The Confidential Enquiry into Maternal and Child Health (CEMACH) study blames factors such as obesity, social deprivation and mother's age.

In 2006 the stillbirth rate in England, Wales and Northern Ireland was 5.3 per 1,000 total births, compared to 5.4 per 1,000 in 2000.

However, the report found there has been a reduction in the number of babies dying in the month after birth.

These neonatal deaths went from 3.9 per 1,000 live births in 2000 to 3.4 per 1,000 in 2006.

These new figures confirm that more research is desperately needed into finding the causes of stillbirth, so that more babies lives can be saved

The number of babies dying in the neonatal period from twin pregnancies has also fallen, from 22.3 per 1,000 births in 2000 to 19.3 per 1,000 births in 2006.
The report also highlights the poor uptake of post-mortem examinations for stillbirths (38% in 2006 compared with 48% in 2000) as one key reason why the cause of so many stillbirths is still unknown. More

Short film

You can see a short film named Stars made by Robert Stillman for his wife after the stillbirth of their son at 8 months here.

Update: thanks to the commenter who highlighted that this video has been removed. Hope some readers were able to view it before this happened.

Healing and hope through stillbirth research

The hardest day of Tara Adams' life was the day she returned home after giving birth last summer. Instead of carrying Kylie in her arms, Adams clung to tokens: molds of her stillborn daughter's hands, wisps of hair, a photograph. And she made plans to bury her baby.

Adams had a healthy pregnancy she felt her daughter kick just one week before her delivery one month early so one question was constant: "Why? Why would this happen?" the 31-year-old South Jordan mother of three recalls. "You almost think back, what did I do wrong? Did I do something I shouldn't have?"

To help parents nationwide seeking similar answers, the University of Utah is analyzing all stillbirths in Salt Lake County from 2006 through 2008 and attempting to pinpoint the many causes of death.

Most parents who lose their babies during pregnancy never find out the true cause. With almost 27,000 losses a year, stillbirth is 10 times more likely to happen than Sudden Infant Death Syndrome. But pregnancy loss remains largely unscrutinized in the United States. Doctors are hesitant to suggest autopsies. Insurance companies may not cover them. And there's an attitude that fetal death is "God's will," or is at least unavoidable.

For the thousands of parents who never get to bring their babies home, the research under way represents hope. Doctors can't prevent stillbirths if they don't know what caused them in the first place.

"Look at SIDS: SIDS deaths have dropped dramatically [since] they started doing research," says Rose Carlson, program director of the Missouri-based national office of Share Pregnancy and Infant Loss Support. "People haven't focused." The U. is doing its research as one of five universities in the Stillbirth Collaborative Research

The network is attempting to answer basic questions: How often does stillbirth occur? What are the causes, and what are the best protocols to investigate the deaths? Robert Silver, chief of the U.'s division of maternal and fetal medicine and principal investigator for Utah's portion of the study, notes researchers have done a better job of preventing infant death. Infant mortality dropped 35 percent from 1985 to 2001; stillbirth rates declined just 17 percent in the same time period. More

My baby was put in a shared grave

Years after losing her son through hospital blunders, Alvina Carrington discovered a new horror
Denis Campbell, health correspondent
Sunday December 2, 2007
The Observer

In late 2004, on a visit to her son's grave, Alvina Carrington was surprised to find fresh flowers. 'I knew I hadn't put them there, so I thought it was odd,' she recalls. But Alvina assumed a friend or member of her family had brought them, and was touched someone had made the journey to Alperton cemetery on the north-west fringes of London to remember Luke, who had been stillborn at seven months.

After his death in October 2003 Alvina's life fell apart. She had lost the first child she desperately wanted and had spent six years trying for. An appalling series of blunders by doctors and midwives meant her pre-eclampsia went unidentified, with fatal consequences. Amid the shock, grief and anger, her relationship broke up. Previously very sociable, the 33-year-old became introverted and virtually housebound. She gave up her job, unable to stop crying every night after she got home. Alvina thought she had reached the lowest point of her life.

But more than a year after that trip to the cemetery, in early 2006, she suffered another heartbreak. In the course of asking what sort of headstone she could put on Luke's grave, Alvina discovered that what she thought was her son's final resting place also contained the bodies of several other babies. The flowers were for one of them, not Luke.

'I'd rung the cemetery, told them Luke was buried there, given them the plot number and asked them what size of headstone I could erect. I'd decided that I was going to have gold lettering saying "Blue: in our hearts always", because that was the nickname I'd given him, and then 'Luke' underneath.

'That would have been the final act. But the cemetery people explained to me that it wasn't my property, that it belonged to Brent Council, that I'd need to get their permission for the headstone and that there were other babies in the grave,' says Alvina. 'I was devastated. I thought it was Luke's grave and only Luke's grave, and that it was my property. I thought the cemetery had got it wrong. But they said to me: "It should have been explained to you that the grave belongs to the council and that other babies are there."

'I wanted to know how many other babies were in there beside Luke, and whether they were on top of each other or side by side. I wanted to know if there was another baby on top of Luke.'

More

Half of Stillbirths Related to Placental Pathology

Thanks to Niobe for sending in this article

Interview with Dr. Gordon Smith, MD
November 16, 2007 - Insidermedicine

Most stillbirths occur as a result of a failing placenta, and understanding placental development and functioning may hold the key to identifying those at high risk for stillbirth early on, according to research published in The Lancet.

According to the Antepartum Fetal Surveillance Guidelines put forth by the American College of Obstetricians and Gynecologists (ACOG):

• Women with high-risk factors for stillbirth should undergo antepartum fetal surveillance using the nonstress test (NST), contraction stress test (CST), biophysical profile (BPP), or modified BPP. Testing should be initiated at 32 to 34 weeks for most pregnancies and at 26 to 28 weeks for very high risk women.
• An abnormal NST or modified BPP usually should be further evaluated by either a CST or a full BPP. Subsequent management should then be predicated on the results of the CST or BPP, the gestational age, the degree of oligohydramnios (if assessed), and the maternal condition.
• In the absence of obstetric contraindications, delivery of the fetus with an abnormal test result often may be attempted by induction of labor with continuous monitoring of the fetal heart rate and contractions. If repetitive late decelerations are observed, cesarean delivery generally is indicated.

In an effort to better understand why stillbirth rates have remained the same or even risen slightly over the past several decades, the investigators reviewed the literature on this condition dating back as far as 1997. They discovered that the standard screening technique, consisting of measuring the height of the uterus with a tape measure, has not changed in four decades. While other more high tech screening procedures have been tried, none has been shown to improve outcomes.

We had a chance to speak with Dr. Gordon Smith from the University of Cambridge about his findings, and what must be done in the research community to address stillbirth.Most cases of stillbirth can be linked to a failing placenta, including premature detachment from the uterus, failure to provide the fetus with adequate oxygenated blood, and problems associated with pre-eclampsia.

When the placenta fails late in a pregnancy it typically failed to develop properly in the first place. As a result, a stillbirth that occurs late in pregnancy may be the result of improper placental development occurring very early on in the pregnancy.Today's research highlights the role of the developing placenta in stillbirth. One way of reducing the rate of stillbirth may be to further investigate how the placenta develops and functions. Such research may provide important insight into how to develop screening tools that identify those at highest risk for stillbirth.

For Insidermedicine in Depth, I'm Dr. Susan Sharma.

Handle with care

Handle with care
October 6, 2007
Sydney Morning Herald
Kate Benson and Bellinda Kontominas.


Karina Jensen was halfway through delivering her dead baby at Sutherland hospital when a midwife handed her funeral brochures, suggesting she read them between contractions because "we have other people with live babies that are our priority".

After holding her daughter, Amber, for less than two hours, Jensen said farewell on advice from a midwife who wanted her "cooled at the morgue because it's better for the post-mortem" - only to find her dead baby then spent 10 hours alone and uncovered in a corridor of the busy maternity unit.

"It was a horrifying experience," she says. "Amber was right outside my room all night and I didn't know it. My husband, Jack, found her. She had been born at 9pm and he had left to go home about midnight. He saw her in a crib in the hallway and thought she'd be taken to the morgue soon. But the next morning when he came back she was still there in the corridor, with mothers walking past."

Jensen says she spent all night listening to other women in labour and the piercing cries of newborns, before discharging herself the next morning.

"It's such a small thing, but being in the maternity ward that night made a painful process that much more painful. It rubbed salt in my wounds."

A day later Jack Jensen received a phone call from a staff member at the hospital asking him to bring Amber back for a hearing check as they had "rushed off" before it could be done. Stunned, he replied: "Our daughter is in your morgue. If you find out that she can hear anything, you give us a call and we'll come get her."

But their agonising experience does not ring true for all parents.

Fiona van der Plaat's first child, Nicholas, died hours after birth at Royal Prince Alfred Hospital in 1998 and, even though she spent five days on the postnatal ward with mothers and newborns, apologetic staff gave her a room of her own as far from the sound of crying babies as possible.

Van der Plaat and her husband, Paul, were allowed to hold Nicholas for as long as they needed after his death. They were given photos of them as a family, a lock of his fair hair and prints of his tiny hands and feet. For days afterwards, midwives would bring Nicholas back from the morgue so relatives could meet him and find closure.

"He had had a post-mortem but they had dressed him in a knitted cap and a blanket so we couldn't tell and they were very encouraging that we should all hold him," van der Plaat says. "It was an extremely painful experience but we couldn't have been treated any better."

For Michael Grosvenor, those emotionally charged weeks after the stillbirth of his daughter, Amelia, left him with little time to mourn. Funeral arrangements and phone calls had to be made to inform family and friends of the couple's loss, but he says he and his wife, Suzanne, were treated with great sensitivity at Calvary Health Care, formerly Hurstville Private Community Hospital.

"You couldn't fault them. The nursing staff went beyond the call of duty, and one even came back to see us on her day off," he says.

The Grosvenors were given all the time they needed with Amelia. Their family and close friends were allowed to visit at all hours and midwives comforted and supported them. More

'I set up website to commemorate son'

'I set up website to commemorate son'
Jane Elliott Health reporter, BBC News

When Helen Savage lost her first baby at 39 weeks she and her entire family were devastated.

Little Samuel was to have been the first grand-child on either side of the family and his arrival was very much anticipated.

But just a week before being born he had died from Group B streptococcus - one woman in four carries this bacteria in her vagina, although she may have no symptoms and be unaware it is there. Babies can come into contact with it while still in the womb or during birth. Some develop serious conditions like pneumonia, meningitis or septicaemia, while, others, like Samuel die.

Some women know they are at risk of the infection, because of previous problems, a premature rupture of their membranes, or because a urine test during pregnancy, reveals that they have the infection. But in Helen's case there were no indication and she only found out the cause of death six weeks later.

"I had a trouble free pregnancy," said Helen, 29, from Lisburn, Northern Ireland.
"We first found out we were expecting Samuel in June 2004, and from the moment we saw two lines on the pregnancy test we were so excited about his arrival. Daddy was sure he was a boy right from the start, but Mummy took a bit more convincing. More

Many baby deaths 'can be stopped'

Growth problems could be spotted during pregnancy

As many as 1,000 stillbirths each year could be prevented if clinicians were able to spot when foetuses were not developing properly, a study suggests.

The NHS's Perinatal Institute will unveil research this week which points to "restricted foetal growth" as the key factor in many stillbirths. If this was picked up in pregnancy, these babies could be delivered earlier and have a greater chance of survival.

Britain has one of the highest stillbirth rates in Western Europe.

The 10-year-study by the Perinatal Institute found that some 40% of the 4,000 babies stillborn each year have growth problems. Of these, around two thirds may have survived if action had been taken.

"We are excited about these findings," said the institute's director, Professor Jason Gardosi.

"If we can recognise that babies are not growing as they should then they can be further investigated and, if necessary, delivered at the right time, and in a good condition, rather than being left in the womb and at continued risk of dying."

Professor Gardosi said in addition to the findings on foetal growth in relation to stillbirth, researchers were also starting to identify "an issue about resources", particularly when it came to the number of cases midwives must deal with.

These remarks chime with statements made by the new president of the Royal College of Obstetricians and Gynaecologists, Professor Sabaratnam Arulkumaran, who believes there are too few consultants and midwives to guarantee the safety of mothers and babies.

In a speech next month, he will cite data showing that most babies die during the night when hospitals have fewer consultants on duty. In an interview with the BBC last month, he said he believed there was too much focus currently on allowing women to give birth at home, and not enough attention on improving conditions in hospital where the majority ultimately give birth.

The tragic human cost of NHS baby blunders

Errors and negligence that result in stillbirths or disabled babies are costing Britain's hospitals billions in compensation. In this investigation, The Observer reveals how staff shortages are wrecking the lives of countless parents.

Denis Campbell
Sunday September 23, 2007
The Observer

What began as a routine pregnancy but turned into a tragedy for one family will finally end this week in a West Midlands courtroom. The hospital charged with caring for the mother will finally agree to pay £5m in damages to the parents of a boy left in a wheelchair, unable to communicate or do anything for himself, after suffering cerebral palsy because of mistakes made by staff during his birth.

It might sound like a lot of money. But consider - it costs £120,000 a year to provide the 24-hour, all-year-round care needed by the boy, who is now 16. The imminent award also reflects the fact that he will never be able to work, and that his parents have had to move to a bungalow and had it specially adapted to cope with his needs, such as a therapy room where he tries to do gentle exercises to stop his muscles from wasting away from moving around so little.

His parents, who have asked not to be named for legal reasons, would rather it had never come to this. 'When I told the boy's father that the report into the case we had commissioned from an independent obstetrician had said that it was negligence, that someone at the hospital hadn't done their job properly and that the care was sub-standard, he began crying,' recalls the family's lawyer, Lindsay Gibb, of solicitors Irwin Mitchell in Birmingham. 'He wanted us to tell him that it was no one's fault, that it was just one of those things, so to learn that it was avoidable was very difficult for him.'

The hospital's first blunder was to send the boy's mother home after hospital staff had failed to induce the birth. An expert witness who gave evidence for the family said that, given the late stage of her labour, she should definitely have been kept in until the baby arrived, if necessary by Caesarean section.

Later, when she was back in hospital again, the child became distressed while he was being delivered and suffered a sudden loss of air to his brain when meconium, the result of his first bowel movement, seeped into his lungs.

Usually, when maternity staff realise that is occurring, they suck out the meconium. But when the anxious personnel attending the woman sought advice by phone from a neonatologist, a specialist in dealing with newborn babies, the doctor seems to have failed to appreciate how serious the situation was. Her guidance meant nothing was done to tackle the baby's oxygen starvation and respiratory collapse. More

Stillbirth Support Symposium

First Candle (SIDS Alliance) is pleased to announce that it will host its inaugural Stillbirth Support & Advocacy Symposium October 22-23, 2007.

Set to coincide with a meeting of the Stillbirth Collaborative Research Network, the symposium will offer stillbirth parents an opportunity to hear from leading stillbirth researchers and meet with representatives on Capitol Hill. Additionally, we will launch a National Stillbirth Peer Support Network, providing training to peer advocates who will offer support to bereaved families in their communities.

As space is limited, First Candle is asking interested individuals to complete a pre-registration application on the First Candle web site at www.firstcandle.org. It is their goal to select a geographically diverse, ambitious group of participants that will help us gain the momentum needed to push this important agenda forward.

Deborah Boyd
Executive Director
First Candle/SIDS Alliance
Phone: 1-800-221-7437

The benefit of hindsight

This post is for those whose babies died silently in utero before the onset of labour.

As I have read blogs of bereaved parents over the last year, I have come across several posts which relate observations which only became clear with the 20:20 vision of hindsight. I thought it might be helpful and potentially even save a life to gather those together in one place. I will relate my own hindsight observations here. If you would like to, please post yours in the comments.

My son died in utero at 40 weeks + 4 days, 3 days after a full check-up with heart rate monitoring and ultrasound.

• In the last week of my pregnancy, I awoke pretty regularly three times a night - at 1am, 3am and 5am. I remember sleeping well on one of the last nights. It's hard for me to recall which one. But I remember waking up and thinking, "that's good, I needed a good night's sleep". With hindsight I think it was a very bad sign and that my son was already in severe trouble.
  
• Again I don't remember which day exactly this was. But I had a funny "feeling" for about 15 minutes. My legs went suddenly weak and I felt a bit flu-ey. I even mentioned it to my mother who was there. But the feeling passed by and I didn't think it important. Now I wonder whether that was a change in blood circulation or something like that.
  
• I wasn't doing kick counts. But with hindsight, I strongly feel that my baby's movements slowed down significantly in the last day. Since I wasn't monitoring them, I didn't really notice until it was too late.

We never found out why my son died. It's possible that taking these observations as alarm signals might have saved him. It's possible that it would have made no difference and he would have died anyway. But you all know that you would take that possibility of changing the world around in an instant, no matter how slim.

CiaoLapo Onlus

Please note the addition of a new link in the sidebar - to CiaoLapo Onlus.

The founder, Claudia, writes:

www.ciaolapo.it/en is the website of CiaoLapo Onlus, a non-lucrative, non-religious association founded in 2006 by my husband and I (both medical doctors) after the stillbirth of our second child, Lapo. Aims of CiaoLapo Onlus are to promote research on stillbirth and to offer psychological support to parents after stillbirth or perinatal death. We are currently offering weekly online self-help groups to breaved parents and free online psychological and gynecological consults to the associates. During last March, our first national congress was held in Florence and the second one is going to take place in October.