How to Use the Directory

Welcome to the Miscarriage, Stillbirth, and Infant Loss Directory. This blog is maintained by volunteers to act like a "telephone book" for blogs dealing with the loss of a baby. It is open to anyone who has ever lost a baby in any way - we do not discriminate by age of your baby or circumstance of your loss. If you think you belong here, then we think you belong here.

When you submit your blog, it is manually added to the list, so it may take some time for it to appear on the list. When you submit your information as requested below, it is easier to spot those emails that have been redirected into the spam mail.

Blogs are listed by category of loss. This is to help you find blogs that deal with circumstances that may be similar to yours. That being said, it can be a moving and healing experience to read the blogs of people who's loss is not similar to yours. You are welcome to read any of the blogs listed here.

Though there could be literally thousands of categories of loss, we have created 4 broad categories: before 20 weeks, after 20 weeks, after birth, and medical termination. Please note that most blogs dealing with extreme prematurity are listed in the "after birth" category even though the gestational age might suggest a different category.

As a warning to those feeling particularly fragile, many of the blogs listed here discuss living children or subsequent pregnancies. In the sidebar links, those blogs are usually marked with an asterisk(*). However, the circumstances of individual bloggers will change, and sometimes the listings do not get updated. It is possible to encounter pictures of living children or pregnant bellies on the blogs listed here.

We also have a list of resources (books), online links, and online publications that you may find useful. Scroll all the way to the bottom of the page to see the full listing of links.

We are so sorry the loss of a beloved child has brought you here. We hope that you will find some solace within the community that has gathered.
Please help us set up this resource for grieving families by:

Welcome

A. Submitting your blog information
(Email Subject: Please Add My Blog)
  • The link to your blog
  • The title of your blog
  • The topic of your blog (see sidebar - Personal Blogs)
  • If your blog discusses living children or subsequent pregnancy after loss

B. Submitting links to helpful web resources
(Email Subject: Please Add This Link)

C. Submitting titles of helpful reading materials or videos/films
(Email Subject: Please Add This Resource)

D. Adding a link to this site from your blog

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Friday, August 31, 2007

Delayed grief

Rachel's Vineyard offers support for people grieving losses in life
by Mary Steichen, 30 Aug 2007

Once a week, I look forward to lending a hand at a crisis pregnancy center. For me, it's a good way to give back to the community that has blessed me so richly. And it helps keep me grounded. I need a reality check once in a while to maintain a spirit of gratitude.

This week, I began thinking about some of the pain and hard times that our volunteer army of dedicated Oklahoma women witness as we strive to help girls in need. Many are frightened or feel alone. Many have had previous abortions or are contemplating one. Some are considering placing their baby for adoption. Often they are struggling with issues such as poverty, rejection, career conflicts, addictions or unhealthy relationships.

Preparing for this column, a question came to mind: "Do women and men continue to grieve these types of issues in their senior years?” Do we mistakenly believe that, as we age, these memories simply fade away? Perhaps many of us buy into the old saying: "Time heals all wounds.” The contrary is true.

Associate Director Susan Lepak of the Office of Family Life in Oklahoma City provided insight on this emotional, often overlooked topic.

"It's quite typical,” she said, "for grieving to surface 20-plus years after an abortion, miscarriage, stillbirth or placing a child for adoption.” This is because women finally reach a time in their lives when they are not so busy raising a family or pursuing a career.

"Menopause contributes, too. They look back at occurrences during their reproductive years, and may experience grief over choices that led to the loss of a child. Sometimes having grandchildren may also trigger grief. More

Hospital says sorry after baby death

Hospital says sorry after baby death
Aug 22 2007
By Michael Corley

A MUM whose baby was stillborn at Warwick Hospital is battling for compensation after finally winning an apology from hospital chiefs.

Mother-of-four Deborah Linster-Ali, aged 38, of Cawston, near Rugby, has finally spoken out about her three-year ordeal following the death of her son Jacob. He was delivered stillborn at Warwick Hospital. Though South Warwickshire General Hospitals NHS Trust finally apologised last month, Deborah says she is still struggling to come to terms with her loss and that nothing will ease her grief.

She said: "I can't ever go back to Warwick.
"Even driving towards the town on the A46 makes me feel physically sick and angry.
"The whole system from start to finish let me down."

She decided to speak out about her ordeal to highlight the first Birth Trauma Awareness Day held last Saturday. Organised by the Birth Trauma Association, she hopes it will give other parents the support she felt she lacked in 2004.

Deborah visited the hospital for a planned induction, but was sent home because the unit was too busy.

She returned the following morning, but was sent to a day centre where she waited until midday to be seen.

A CTG trace (used to monitor the baby's heartbeat) was supposed to be checked by a doctor before Deborah was given the labour-inducing drug, prostaglandin.

But according to hospital records, this check does not appear to have happened. More

Thursday, August 30, 2007

MISS Foundation News Release - Stillbirth

babykick teams with MISS Foundation
promoting kick counting for the prevention of stillbirth

Manhattan Beach, Calif.—July 25, 2007--More than 40 years of research shows that an expectant mother's tracking of her baby's fetal movements is an excellent way of checking on her baby's well-being. Kick counting, the systematic recording and tracking of fetal movements, is easy to do and is recommended by the American Pregnancy Association (APA) and the American College of Obstetricians and Gynecologists (ACOG).

The MISS Foundation, an international organization that supports grieving families after a child's death and educates on infant death, prevention and awareness, supports the Pregnant Women Count campaign, which encourages kick counting as a means to reduce the risk of stillbirth. babykick, with their newly launched kickTrakTM, is proud to announce their partnership with the MISS Foundation to promote kick counting and the prevention of stillbirth. Both organizations share the goal of education and research leading to healthy pregnancies and fewer child deaths by supporting kick counting and the use of the kickTrak. The kickTrak enables moms-to-be to track and record their baby's movement pattern, keeps track of pregnancy progress and also times contractions when labor begins. A portion of the proceeds from kickTrak sales will be donated back to the MISS Foundation in support of advocacy programs and educations.

"The kickTrak smart kick counter is a small, hand-held device which helps ensure moms-to-be of the health of their pregnancy," says Diep Nguyen, MD, developer of the kickTrak. "Kick counting every day and using the kickTrak gives moms great peace of mind, knowing their baby is developing as expected."

kickTrak was developed based on scientific research emphasizing the kicks, jabs, rolls, twists, and turns felt by mothers are excellent indicators of their baby's well-being. Monitoring of fetal movements is not a full time task and both APA and ACOG recommend expectant mothers to note the time it takes for their baby to complete ten movements, at approximately the same time each day when the baby is usually most active. Although each baby is different, healthy babies should have ten movements within two hours. Most babies usually do so in much less than 30 minutes.

"In this time of increasing pre-term birth and increased managed care it is important to encourage mothers to become ever more engaged with the progress and health of their pregnancy, “ stated James C. Caillouette, M.D., F.A.C.O.G., F.A.C.S., The clinical professor emeritus from University of Southern California Keck School of Medicine went on to say, “babykick’s kickTrak is a proven methodology, and when used on a regular basis as suggested, will provide increased mother, baby and physician communication, which is beneficial for everyone. I am confident that kickTrak will become standard of care."

"The goal of kick counting is not to make moms anxious but to have it be a part of their daily prenatal care," says Dr. Nguyen. "Medical research supports the daily kick counting method as a simple, effective, harmless and reliable way to screen for fetal well-being to reduce the risk of stillbirth."

As soon as a woman knows of her pregnancy she can begin using kickTrak to track and count down her progress. After 24 weeks gestation she can begin her daily use of kickTrak to keep a reliable diary of her baby's movement, and then time contractions when labor begins. Noting significant changes in the baby's movement pattern empowers moms to promptly alert their doctors to potential problems. Early detection of problems allows for timely intervention and can potentially reduce the risk of stillbirth.

The baby kickTrak is available for purchase in the MISS Foundation store where a portion of all purchases benefits the MISS Foundation.

MISS Foundation News Release - SIDS

Soft bedding found to be hazardous to infants
Arizona company teams with the MISS Foundation for safer alternative to crib blankets

Anthem, AZ - Despite the Consumer Product Safety Commission stating that soft bedding in the crib may be hazardous to babies under 12 months old, parents across the country continue to unwittingly endanger their child’s safety by using crib blankets, bumper pads and other soft bedding. The risk is unnecessary and the solution is practically old-fashioned in Europe – and lauded by many U.S. pediatricians, health experts and now the MISS Foundation (www.missfoundation.org), an international organization that supports grieving families after a child’s death and educates on infant death prevention and awareness. Earthwalk Design LLC is proud to announce their partnership with the MISS Foundation to promote safer sleep practices for babies under 12 months of age. Their mutual goal is to spread the word about the potential risks of soft bedding by offering infant and toddler “sleep sacks” as a safer alternative to standard crib blankets. A portion of proceeds will be donated back to the MISS Foundation.

“Sleep sacks are wearable blankets that cannot be kicked off or cover a baby’s face,” states Christina Alborn, owner of Earthwalk Design and www.pampersack.com. “Our PamperSack™ sleep sacks are not a garment, but are worn over pajamas. They keep a baby warm like a blanket would, but won’t cover a baby’s face like soft, loose bedding can.” Sleep sacks have been used extensively in Europe for the last thirty years.

Soft bedding, rebreathing and the SIDS factor

Soft bedding has been linked to a condition called “rebreathing.” Rebreathing occurs when bedding molds around or covers a baby’s face as they sleep, creating a stale pocket of expired air eventually reduced to carbon dioxide. Oceanside, CA, based pediatrician Dr. Douglas Stein states, “It has been established that rebreathing, when infants breathe their own exhaled air, is a theory associated with Sudden Infant Death Syndrome (SIDS). Laying infants to sleep on their backs has reduced the incidence of SIDS, but babies can still roll and therefore soft bedding is to be discouraged.”

“My goal is not to be an alarmist or to give parents a false sense of security,” says Alborn. “I just firmly believe in reducing identified risk factors until we have more information.” Joanne Cacciatore, CEO and Founder of the MISS Foundation, echoes the sentiment by stating, “Sleep sacks are a common sense choice. They have been recommended by medical associations, including the American Academy of Pediatrics, to reduce bedding related mortality. If these products help to save one baby’s life, we are grateful.”

MISS Foundation News

Important News from the MISS Foundation:

July/August newsletter available online.

:::



The Alliance of Grandparents a Support After Tragedy (AGAST) has officially merged with the MISS Foundation as a program outreach to grieving grandparents.

AGAST, founded by SIDS grandmother, Sandra Graben, began as an outreach to grandparents after the death of a grandbaby from SIDS. It quickly morphed into an outreach to all grandparents after any grandchild's death.

Because their mission of overall family support was so well aligned with the philosophy of the MISS Foundation, Graben and Joanne Cacciatore, MISS Foundation CEO and founder, met and determined that the unification of the groups would be beneficial for families experiencing life worst tragedy: the death of a child/grandchild.

The merger became official last week.


The name of the outreach will be: MISS Foundation's AGAST Outreach Program and will include the newsletter, memorial cards, grandparent-to-grandparent mentoring, and family support packets.

If you have any questions about this important merger, please contact info@missfoundation.org.

:::

You can listen to the song, Soaring Away, at the band's profile.


Dear Friends of the MISS Foundation,

Ten years ago this week my wife and I lost our son.

Needless to say, our world was shattered and we were catapaulted into a downward spiral of grief, despair, and depression.

We have managed to move forward, but - as you are well aware - it changes you forever.

More recently, I have had the privilege of discovering the MISS Foundation when I was approached by MISS volunteer Barbara Kurtz and asked about doing a fundraiser with my band, 4 Car Garage.

What has come of it is the song "Soaring Away."

"Soaring Away" is an original song that I wrote in honor of my son, Bradley.
It is my attempt to describe the feelings that are harbored when you go through something like we have and that you hope nobody else ever has to experience.

It is an emotional, bittersweet song, but I hope that someway it can help in the healing process for all of us.

Coincidentally (or not!), the song was accepted by iTunes on the ten year anniversary of Bradley's birth.........that's got to be a sign that our children are 'soaring away.'

All proceeds from the song will go to the M.I.S.S. Foundation and their efforts. There is a link to the iTunes store below.....take a listen and download it if you want (it's also available on Napster & Rhapsody). I hope you enjoy the music - thanks for listening......peace be with you.

Greg White, M.D.
Chief of Orthopaedic Surgery
Phoenix Children's Hospital
4 Car Garage - 4 Car Garage - Soaring Away

Monday, August 13, 2007

Submitting Blogs

I will be away for the next week and will update our blogroll upon my return. Please know that if you have submitted your blog, it will be added as soon as possible when I am home.

Monday, August 6, 2007

Perinatal Loss: improving care and prevention

29 September - 2 October 2007
Birmingham, UK


This international conference is hosted by Sands and the Perinatal Institute, on behalf of the International Stillbirth Alliance.

visit the conference website here www.isa2007.org
download the conference flyer here
to register visit the conference site or register directly with Profile Productions

The conference will focus on perinatal loss – the human impact, the causes, and the possibilities for prevention. Its purpose is to gain insights and ideas for future collaborative initiatives to reduce the burden of perinatal death.

This is a rare opportunity to bring together researchers, bereaved families, clinicians, health care professionals and support organisations from many different countries.

Many clinicians and scientists devote much of their working lives to furthering the understanding of adverse pregnancy outcome. Many bereaved parents, knowing the real consequences of baby loss, are committed to improving the care that others who have suffered a loss receive. Both groups have much in common and together can represent a very powerful force for change.

Aims:

  • to present the human consequences of stillbirth and other perinatal loss
  • to share information on current activities and research programmes
  • to strengthen collaboration on initiatives to reduce perinatal death
  • to share knowledge and experience of best practice in care when a baby dies
  • to encourage networking and informal exchange.

More

Saturday, August 4, 2007

Xanthe Pheby

Our campaign to cut stillbirths
SARAH HALL 03 August 2007 11:22

A couple left heartbroken after the mysterious death of their baby daughter have called on the Government to help prevent further deaths - and have started a national petition for more money to investigate why it happens.

Emma and Alex Pheby did not know there were any complications with baby Xanthe until she was stillborn. Doctors then told them she had died just eight hours before.

Mr and Mrs Pheby, from Bowthorpe, have been left devastated, as well as baffled, by the death of their second child because the pregnancy was problem-free and “low risk”. The couple said they did everything they possibly could to ensure they had a healthy baby but today said more money needs to be pumped into why so many happen, with one in 200 pregnancies resulting in a stillbirth.

Now they have set up a campaign asking the government to give more funding into researching unexplained stillbirths which affect a staggering one in 200 pregnancies. Mrs Pheby, 34, said: “No one knows why Xanthe died. I had a smooth pregnancy and various scans the way through which all came back normal with absolutely no problems.“When I gave birth I had seen the midwife just two days before and everything was fine. I was at 40 weeks but I went into labour quickly.

“We did not even know Xanthe was dead until she was born. She weighed 8lb 3oz and was so nearly with us. More

Friday, August 3, 2007

The Politics of Stillbirth

This article is a few weeks old but the topic has been a point of discussion in the past on different people's blogs. In the country where I live in Europe my first son, stillborn at 40 weeks, was inscribed on my family certificate, with the word "stillborn" next to his name. This only happens if the birth takes place after 24 weeks (the defined boundary between miscarriage and stillbirth here). It also only happens if you want it to.

A new movement seeks to award special certificates to fetuses that are stillborn, but pro-choice advocates worry that this is yet another step toward fetal personhood that could endanger abortion rights.
Allison Stevens July 16, 2007

Thirteen years ago, Joanne Cacciatore delivered a stillborn fetus, a trauma that was compounded by the fact that she received a death certificate in the mail but no birth certificate -- a tangible memento she said would have helped her grieve.

Motivated by her loss, she mounted a grassroots campaign in her home state of Arizona to get the government to give parents who deliver stillborn fetuses the option of receiving a "certificate for stillborn birth" -- and in so doing unintentionally waded into the turbulent waters of abortion politics.

Although reproductive rights advocates say they sympathize with Cacciatore, they also fear her effort -- which has since ballooned into a nationwide campaign -- could aid anti-choice groups as they attempt to chip away at or eliminate abortion rights. "There's no question in my mind that the anti-abortion crowd will look for some way to use this," Kim Gandy, president of the National Organization for Women, has said. At issue is the question of "personhood," or when human life begins; the answer lies at the heart of the debate over abortion.

Opponents of abortion rights contend that life begins at the moment of conception, and they have sought to define embryos and fetuses as human beings with a right to life. Under their logic, abortion is murder and should be illegal. Supporters of abortion rights do not equate embryos and fetuses with full human beings. Granting "personhood" to embryos and fetuses before they are born raises their legal status and jeopardizes women's right to abortion, they say. More

Thursday, August 2, 2007