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For Additional Information, Please visit our website:
               www.stillnomore.org
     We’re Fighting Stillbirth, The Destroyer of Dreams
Welcome to the official website of The National Stillbirth Society, an activist organization
comprised of parents who, having lost one or more babies to this vilest of all "birth defects",
are fighting back.

Last year over 27,000 babies in the United States were delivered dead. For the most part they
were of viable gestational age. About two-thirds of them showed no physical cause to
explain why they died. And yet, babies, like adults, must die for a reason. Medical science
just has to search harder to find that reason in the case of our babies.

At the Pregnancy Institute in Slidell, Louisiana, Dr. Jason Collins, an OB and medical
advisor to our group believes he is on the track of what may prove to be the leading
"unknown" cause of stillbirths. Working with empirical data he has drawn a construct
wherein he postulates that late term babies are often the victims of simple cord compression
during maternal sleep. If he is right this could be a major breakthrough, much like SIDS
"Back to Sleep" discovery which was also based on a positional causality.

                   We assume you have come to this site either because you suffered a loss,
                   or have a family member or friend who suffered a loss and are trying to
                   understand this thing called "stillbirth". Speaking as one who became a
                   stillbirth father at age 60, I can tell you that I had no idea it could and was
                   still happening. That's because no one - the medical community especially
                   - is comfortable talking about it so it sits there like the elephant in the
                   middle of the living room floor.

                   There is no excuse to allow it to continue on as it has for all of recorded
history. Whether your loss was a year ago, a decade ago, or as recent as last week, we need
your help to win the battle. We parents are the ones with a stake in the outcome. We are the
ones who know the pain of losing.

The National Stillbirth Society was formed by stillbirth father Richard K. Olsen to "educate,
agitate and legislate" for greater stillbirth awareness, research funding, and the passage of
legislation in every state to recognize our babies births by requiring states issue a "Certificate
of Birth Resulting in Stillbirth". The medical profession would like to maintain the fiction
that our babies weren't babies but merely "fetuses". But that fantasy fades in the light of
reality when one considers that our stillborn babies, most of them viable, could have survived
has they been born just days earlier.

Stillbirth is an "Equal Opportunity Destroyer of Dreams". It cuts across age lines, color lines,
race lines, class lines, and all lines. Norman Rockwell type mothers can have stillbirths and
"crack mothers" can have live births. At present there's no way to predict who will be next.
Though stillbirth is as random as lightening strikes in a thunderstorm it is rarely caused by
anything the mother did or didn't do during her pregnancy.
Substance abusers have early miscarriages and deliver developmentally impaired babies,
but stillborn babies are also born mostly to mothers who followed the rules and had
adequate pre-natal care. This tells us there is no simple answer. The cause or causes of
stillbirth lie somewhere else - other than the obvious - and we need to find it quickly
because 70 babies are being born dead every day!

There is no shame in having a stillborn baby, only profound sorrow. There is no fault
to be found, only frustration in what a mother sees as her failure. Having said that, join us
as we share what we have learned so far. There is work to be done to change public
awareness and attitudes and we hope by the time you've finished viewing our site you'll
want to become a member and volunteer in your state to change the laws.

One last thing before you leave, please subscribe to our e-mail notification service. It
will only take a few moments but it will enable us to inform you of recent developments
both nationally and in your state. Thank you for stopping by the only parent-led activist
site on the Internet that fights stillbirth...... because all our children matter.




Executive Director
The National Stillbirth Society
                                 Our Mission
The mission of the parent-led National Stillbirth Society is to
"educate, agitate and legislate" for greater stillbirth awareness,
research and reform. Ours is an "activist" organization, fighting
to overcome the inertia of traditional practices and challenge
medical care providers who routinely accept stillbirth as an
unfortunate but unavoidable outcome of pregnancy in a small
percentage of cases.

Every year more than 26,000 American women endure
pregnancy and the pain of childbirth only to end up with a dead
baby. More than half of these women will never learn why their
babies died because their doctors don't know and autopsies don't
show. How can a mother's womb that gave her baby life and
nourishment become her baby's tomb? Without answers, there can be no prevention.
Without prevention, there can be no peace.

While some stillbirths may be unavoidable, babies who evidence no medical cause of
death should not be dying. Ultimately we hope to reduce the incidence of stillbirth
from all causes, but at present unexplained stillbirths present the best chance we have
to achieve immediate and significant reductions in stillbirth fatalities.

With the help of mothers and fathers, friends and families, and other child fatality
organizations, we can change the course of stillbirth in America and we must, because
if we don't, who will?

         WORKING TOGETHER WE CAN REDUCE STILLBIRTHS
         FROM ALL CAUSES BY 50% OR MORE WITHIN 5 YEARS
                                Our Goals
1. Build public awareness of S.A.D.S. and the fact that most stillborn babies
   were not "fetuses" but viable babies otherwise capable of medically
   supported life and normal development outside the womb. For this reason
   we call them "vianates".
2. Enact legislation in all states modeled after Arizona's Missing Angels
   Act that would require the issuance of a Certificate of Birth Resulting in
   Stillbirth for all stillborn babies, past and future, thereby providing official
   acknowledgement of the mother's having given birth, even though her
   baby was born still.
3. Introduce federal legislation to create a uniform post mortem protocol
   for stillbirths and support the establishment of a centralized repository for
   the filing of autopsies conducted under such protocol. Require that
   autopsies be offered at no charge to parents of all third trimester stillborn
   babies.
4. Promote the establishment of a "best practices" protocol for
   pregnancy management. Such a protocol shall include ultrasound and
   NST testing to screen pregnant women for potential umbilical cord
   problems including loops and cord compressions that produce FHB
   decelerations which can result in a stillborn baby.
5. Promote the development of an at-home home fetal heartbeat monitor
   with real-time Internet reporting software. Encourage the deployment
   of such systems for use during maternal sleep when most cord-related
   stillbirths occur.
6. Promote specialty pregnancy clinics utilizing the "best practices"
   protocol in place of the current "one-size-fits-all" standard now in use,
   which "standard" is set by what insurers will pay for, rather than available
   technology and medical need.
7. Create a media awareness campaign to promote “Kick Counting” to
   monitor the well-being and activity level of a developing baby, and to help
   the mother to identify potential incidents of fetal distress which could
   result in a stillbirth.
8. Create a "National Center for Stillbirth Research" to serve as a
   repository for extant stillbirth data, case studies, articles, etc. Build a
   knowledge base that would comprise the core information needed to
   facilitate empirical analysis into causes of unexplained stillbirths, the area
   most likely to benefit from such research.
9. Build Support for Stillbirth Organ Donation A part of us dies when our
   baby is born still, and yet there's a way for a part of our baby to "live on"
   through organ donation. Not all babies will qualify to be organ donors but
   for those that do it can mean that the life of another infant could be saved.
10. Establish a nationwide network of stillbirth parents and appoint
    Directors in every state whose task it will be to co-ordinate these parents in
    their state in order to effectively lobby their elected officials to implement
    the goals of The National Stillbirth Society and to serve as a liaison with
    the National headquarters.
                    Goal #1. Stillbirth Awareness

                            Frequently Asked Questions

1) What is "stillbirth"?
   Stillbirth is defined as the intrauterine death and subsequent delivery of a
   developing infant that occurs beyond 20 completed weeks of gestation. (A loss
   prior to 20 weeks is termed a miscarriage or "pregnancy loss".) Top

2) What is S.A.D.S.?
   SADS is an acronym for "Sudden Antenatal Death Syndrome" a clinical term
   for "stillbirth". Similar sounding to "Sudden Infant Death Syndrome" SADS
   claims over 10 times as many babies' every year as does SIDS. Top

3) How common is stillbirth?
   An estimated 26,000 SADS deaths occur annually in the U. S., many of them at
   or near full term. Stated another way, 1 in every 115 deliveries is a "still" baby.
   Despite advances in so many areas of obstetrics, the incidence of stillbirths in
   many states has been rising in over the past decade. Top

4) What causes stillbirth?
   Data collection on stillbirth is often inconsistent from state to state, however, it is
   believed that 1 in 3 stillbirths are caused by cord accidents, infections, genetic
   anomalies, maternal diabetes, and placental failures of varying kinds. Two-thirds
   of stillborn babies, including many that undergo a post-mortem evaluation, are
   diagnosed as having died for "undetermined or unknown" reasons. It is not
   uncommon that autopsies fail to reveal the cause or causes of these mysterious
   deaths! Top

5) Are stillbirths predictable?
   High-risk pregnancies predisposed to intrauterine death or pre-term birth can be
   identified in cases where congenital anomalies or cord entanglements are the
   cause. Stillbirths that occur at or near full term are often only discovered during a
    late prenatal exam, or in some cases during labor.   Top



6) Are stillbirths preventable?
   Stillbirths are as random as raindrops, occurring for no apparent cause even in
   the case of mothers who lead a healthy lifestyle during pregnancy. Most late and
   full term stillborn babies are born to mothers who experienced no problems with
   their pregnancy, who were healthy, and who led substance-free lifestyles. Rarely
   is a stillbirth caused by something the mother did. Until better data is available,
   and until autopsies are routinely offered to all stillbirth families, the causes, and
   thus, any new risk reduction measures, will continue to elude doctors. Top

7) Does a tendency to stillbirths run in families?
   There is no evidence to show stillbirth is an inherited condition. However, since
   the occurrence of stillbirth is so high in the general population - 1 in every 115
   deliveries is a "still" baby - it is not unusual for several related women in a family
   to have experienced stillbirths. Top

8) Is a woman who experiences a stillbirth at risk of future stillbirths?
   All women who conceive are at risk of experiencing stillbirth. In this sense it can
   be said stillbirth is "an equal opportunity destroyer of dreams." But the record
   shows that about 97% of the time, subsequent pregnancies result in healthy, live
   babies. Top

9) How is a stillborn baby delivered?
   Mothers of stillborn babies must undergo the same physiological processes, as do
   live birth mothers. The preferred method is vaginal delivery. Even under ideal
   conditions, a caesarean section is a high-risk procedure for the mother and is only
   used when the baby would be at risk during a vaginal birth. In the case of a
   stillborn, that risk is no longer a consideration and thus the health and safety of
   the mother is paramount. Top

10) Can a mother have time with her stillborn baby after delivery?
    She absolutely can and we encourage it! Most hospitals will bathe and dress her
    baby and then encourage not just the mother, but also the father and other family
    members present at the birth to hold and caress the baby. Likewise, surviving
    siblings should have a chance to meet and say goodbye to their newborn brother
    or sister, too. Mothers who declined this chance to bond with their baby have
    invariably told us that they regretted the decision they made at the time. Their
    baby has been a part of their family life for almost a year and the need to say
    goodbye is very real. Top
11) What about taking pictures?
    For many families, pictures taken holding their baby are later cherished as a
    memento of a sad, but significant, time in their life. Even taking photos with
    siblings and family members holding the baby is helpful to most families. Some
    may think it sounds ghoulish to photograph the baby but there will be no other
    chance than now. Other family members who die leave behind photos and so too
    should our babies. Hospitals routinely take photos and hold them until asked for
    them by the family. Consider a close up photo of your baby's hand in yours as a
    beautiful memento that can be comfortably shared with family and friends. Top

12) Can a stillborn baby be an organ donor?
    In some cases, near or full term stillborn babies can be organ (heart valve) or
    tissue donors. Parents who permit their baby to be a donor often draw comfort
    from the thought that a part of their baby might live on. Donation is also the only
    hope for life for other parents with a critically ill infant. Most hospitals are
    required by law to request donations. Rather than being insensitive they are
    merely trying to assist the living. For information search "Donor Network" + the
    name of your state on the web. Top

13) Should an autopsy be performed?
    Personal and cultural values hold sway here, however, from a medical view it is
    essential to determine why a baby died, especially in the case where a couple
    may have future pregnancies. Unfortunately, only about one-third of all stillbirths
    can be linked to a specific cause, even after an autopsy. More research is needed
    into the cause or causes of stillbirths and having autopsy results available can
    help doctors searching for answers. Top

14) Will parents receive a birth certificate for their baby?
    Until recently the answer was no. Then in 2001 Arizona became the first state to
    issue a Certificate of Birth Resulting in Stillbirth. Enacted into law during the
    2001 Session at the behest of The MISS Foundation, other states are considering
    this change. The National Stillbirth Society has joined MISS in promoting state-
    by-state adoption of this landmark legislation. (Utah and Indiana now have such
    a law too.) Top

15) Is it customary to have a funeral for a stillborn baby?
    Yes, in fact state laws assign parents responsibility for "disposition" of their
    stillborn child's remains, either by burial or cremation. (Some states permit
    mothers who experience a miscarriage to bury the fetus.) Top
16) Where can one find support groups?
    Your doctor and hospital grief counselor will be familiar with resources. The
    Internet is also an excellent source for finding support groups. We suggest that
    parents start by looking at the MISS Foundation website. Founded in 1996 by
    Joanne Cacciatore, a stillbirth mother, the MISS website has grown to be one of
    the largest and most respected sites on the Internet. Joanne has also written a
    book, "Dear Cheyenne, A Journey Through Grief." It's an account of her first
    days, weeks and months following her daughter's death. Top
17) Should one talk about the baby with the parents?
    Most mothers want you to, but ask first to be certain they're ready. Asking
    permission allows the family to make the decision. If they do wish to talk, listen
    patiently and be empathic. If they're not ready to talk now, then be there when
    they are, and let them know you'll be ready to listen then. Top
18) What can one say to a mother who has suffered a stillbirth?
    "I am sorry," works. "I can't imagine what you are going through," is an
    appropriate and accurate response. Anything that validates what the family is
    experiencing is acceptable. What doesn't work is the panoply of platitudes one
    hears so often. Avoid, "It was meant to be." "You're young, you can have
    another." "Your baby is in a better place." "It's not like you had time to love
    him." If in doubt, its best to say nothing and just be there for them. Sometimes
    just to hold another's hand speaks volumes. A hug is good too. Top
19) Is it proper to send flowers?
    Once again the answer is a matter of personal choice. As an alternative way to
    express their sorrow some have chosen to make donations in the name of the
    baby to a stillbirth prevention cause. The Missing Angel Foundation is a frequent
    recipient of such donations and will list them on its website along with the name
    of the deceased child in whose memory the donation is made. Top
20) What is the Missing Angel Foundation?
    The Missing Angel Foundation is a 501.C.3 charitable organization that operates
    a memorial website for grieving parents who have suffered the loss of a child of
    any age from any cause. It supports The National Stillbirth Society and provides
    funding for our operations. In addition it provides grants to the MISS Foundation
    and similar organizations that provide compassionate grief support to stillbirth
    parents. Top
21) Who founded The National Stillbirth Society?
    The National Stillbirth Society was founded by Arizona resident Richard K.
    Olsen, a stillbirth father. It's a non-profit membership-based organization created
    to "educate and agitate" for stillbirth research and reform. . Top
22) How can I Join The National Stillbirth Society?
    Membership is open to anyone who wants to enlist in the fight against stillbirth.
    Simply download, print and mail in the Membership Application available here
    as a pdf document with a $35 check for your first year's dues. (Sorry, we're not
    able to take credit cards online just yet.) When we receive your application we'll
    send you a Membership Card with our gift of a sliver "Missing Angel Pin". The
    pin is the emblem of our Society and is crafted especially for us by Mexican
    artisans. It's a $20 value and our gift to you for becoming a member. We
    encourage you to wear it as a symbol of your love and caring for all stillborn
    babies. Top




    Goal #2. Why We Need A Certificate of Still Birth
Haven't we all at one time been in a movie theater when the film broke? One moment
we're caught up in the action and suddenly, there is no story on the screen. Time out
while the projectionist rethreads the rest of the reel. If only life were like that. If only
sudden interruptions could pick up where they left off. But they can't always.

                                      The birth of a dead baby is a break in the action. The
                                      story is over. We get to say hello and goodbye in the
                                      same breath. Instead of a bright future, all we're left
                                      with is shattered dreams of what might have been.
                                      When the movie breaks we get our money back. In
                                      real life when the "film" breaks we're given a fetal
                                      death certificate. No baby to take home. No reward
                                      for the months of waiting. No acknowledgement for
                                      our having given birth.

                                     When we discover that what once lived within us is
                                     dead we want to run away. But we can't, just yet.
                                     First we must deliver our baby, just like the mothers
                                     of live babies do. We must endure the pain. Just like
                                     mothers of live babies. And when it's over we get to
hold our baby, just like mothers of live babies do. But then we have to give our baby
back and go home to an empty nursery.

Contrary to what the pundits say, it is possible to fool Mother Nature. She doesn't know
our baby died, and so she dutifully produces milk to nourish and protect that, which is no
longer living. She knows we gave birth. We know we gave birth. But the state says not.
Stillbirth mothers are not yet acknowledged as mothers by most states, but we're
working to change that.

Birth is a process that all mothers endure; live or "still" is the outcome of that
process. If we recognize a live birth, why would the state not recognize a stillbirth? Is it
to punish the mother whose baby is born dead? Is she not somehow worthy? Did she fail
somehow? That's what she thinks. If we give a the mother of a live birth a "Certificate of
Live Birth" why would we not give the mother of a stillborn baby a Certificate of Still
Birth? Or a Certificate of Birth Resulting in Stillbirth. That's the reality of the event!
All mothers give birth; only the outcomes of those births differ.

To deny a woman a "Certificate" when she fails to produce a living child, is to say that
she did not give birth, which is not true. To deny a woman recognition for this seminal
event in her life is to deny the event occurred. To deny a woman recognition is to tell her
she is a failure. It is an open wound upon her soul that will never heal unless and until her
sacrifice is recognized; just as live birth mothers are recognized.

On August 9, 2001 in Phoenix, Arizona, Sharon Arnold, wife of NSS Founder Richard K.
Olsen, and Joanne Cacciatore-Garard, founder of the MISS Foundation and the author of
the MISSing Angels Bill, were presented the first ever Certificates of Birth Resulting in
Still Birth to be issued in the United States. The state of Arizona has led the way by
acknowledging that these brave women and others in the state gave birth, and that their
daughters, Camille and Cheyenne, though born still, did for one brief and glorious
moment pass through this world. Your state should recognize you and your babies too,
because all our children matter.




   Goal #3. Why We Need a Uniform Autopsy Protocol

Imagine every law enforcement agency, local, state and federal, that collects fingerprints
does so on their own forms and that once collected, the forms are kept at the facility that
collected them. These fingerprint forms would be useless for the investigation of crimes.
Information is collected, but it is practically inaccessible.

Now imagine the current practice wherein stillbirth autopsies are reported on
hundreds of different forms, not only inaccessible, but incomparable too.

Today in America there is no uniform post mortem protocol at the national, state or local
level. Pathologists who perform autopsies do so using their own choice of protocol.
While rules for keeping copies and samples exist, they are generally kept either at the
hospital or the laboratory where specimens are examined. That brings us to the second
reason so little is understood about stillbirth in general.

In addition to there being no uniform comparable protocol for stillbirth autopsies,
there is no central repository for autopsy findings either.

Until there is a uniform protocol, which mandates the minimum tests that must be
performed, and specifies the minimum information to be collected, and sets out the
format in which it shall be reported, and identifies the agency to which it must be sent,
there can be no hope of reducing the number of stillbirths in America.
A Phoenix mother, whose full term baby died on the eve of its scheduled delivery,
requested an autopsy be performed. It was done, but significantly, the pathologist never
interviewed the mother. When a plane crashes, NTSB interviews survivors. What did
they see, hear, smell, and feel before, during and after the crash? Is not the mother a
survivor too of a devastating “crash”? Would not her experiences in the days and hours
preceding the event be significant? Just one more example of the inadequacy of current
autopsy practices.

We had once thought that this was an issue to be addressed at the state level, and indeed
some states have done so. New York recently passed a law mandating that a uniform post
mortem protocol be designed for unexplained deaths of infants under one year. The
National Stillbirth Society is in the process of asking New York to extend the
requirement to offer autopsies for all third trimester stillbirths. But the likelihood of
getting every state to sign on to a uniform autopsy protocol seems to be remote at best.
Therefore, we have concluded that federal action is required.

Uniform protocols and a central repository are meaningless unless there is an
accompanying requirement that autopsies be offered as a matter of law for all third
trimester stillbirths.

       Is there any reason the OB/GYN attending the birth would suggest to the parents
       that their stillborn baby be autopsied?

       Is there any reason the hospital where the stillbirth occurred would suggest to the
       parents that their stillborn baby be autopsied?

       Is there any reason the insurance company paying the hospital bill would suggest
       to the parents that their stillborn baby be autopsied?

The possibility the doctor or hospital may have been culpable, plus the certainty that a
cost will be incurred, renders the recommendation of an autopsy unlikely by any of the
above three. Add to that fact the shock of the parents and the likelihood that they are too
emotionally distraught to consider the merits of an autopsy and to demand one be
performed, are reason enough to require that parents be offered an Informed Consent
Form as proof an autopsy was offered.

In summary, here is the autopsy agenda of The National Stillbirth Society.

Cause the introduction and lobby for passage of federal legislation to reduce the
incidence of stillbirths by creating a centralized repository for findings of autopsies
conducted under a national uniform protocol. Require that autopsies be offered at no
charge to parents of all third trimester stillborn babies. Make the findings of the uniform
autopsies available to research facilities to determine the cause or causes of unexplained
stillbirths, and to provide a better understanding the etiology of all known causes, for the
purpose of reducing the number of deaths that occur every year with devastating effect
upon women and their families.




Goal #4. Standard Protocol for Pregnancy Management

Promote the establishment of a "best practices" standard protocol for pregnancy
management based upon the premise that all pregnancies should be treated as "high risk".
Fetal monitoring shall include, in addition to fetal heartbeat measurement using Doppler,
1) an ultrasound examination and 2) non-stress testing at all visits. The frequency of OB
visits shall be determined by the medical practitioner on a case by case basis according to
the progress of each individual pregnancy."

Pregnancies are like steeplechase races wherein the horse and rider must safely cross high
hurdles and obstacles placed in its path. From the starting gun to the finish line there's no
telling which horse will stumble, which rider will fall. The same is true for pregnancies.

Not all women make it to the finish line. The record is 1 in every 115 births will be a still
birth. Doesn't sound like bad odds unless you're the 1 in 115. What makes it even worse
is that every woman is at risk of being the one.

We hear and read about "high-risk" pregnancies, which suggests to women there must be
an offsetting "low-risk" pregnancy. Nothing could be further from the truth. Pregnancies
are all "high-risk"; some are just higher risk than others.

Back to our horse race, every horse and rider is at risk of falling at any point along the
course. Same too for pregnant women. When one considers the myriad of multiplications
that build a baby from a few cells to start we begin to marvel that any pregnancy can have
a fruitful outcome. But they do. And they don't.

If only we could place our bets after the roulette wheel has stopped spinning. Neither Las
Vegas nor life permits us that opportunity. That's why we must treat every pregnancy as a
high-risk pregnancy and develop a "best practices" pregnancy management protocol
based upon this assumption. To assume the worst at the outset is to be prepared for the
worst. So what's stopping us? Insurance companies!

Current protocols are based in large measure on what procedures and tests and what
frequency of visits insurers will pay for. While it is true that OB's could offer women
additional tests or increased frequency of testing at their expense such an offer would be
tantamount to an admission that the present protocol is not adequate. So women continue
to be faced with a "one-size-fits-all" protocol that treats all pregnancies alike, despite the
fact that not even two pregnancies are alike.

FACT: Ultrasound can image umbilical cords. To discover for the first time in the
delivery room that a baby is entangled in its cord raises the question, "What was the
doctor looking at when he or she performed those ultrasound tests?" Some women tell us
that their doctor claims umbilical cords cannot be imaged with ultrasound and that the
outcome was unforeseeable! If we can have a "picture" of a baby in utero sucking its
thumb, why is it we can't image umbilical cords? That's a no-brainer to figure out.

The two saddest words we hear stillbirth mothers utter are, "If only!"

"If only I knew this was possible." "If only someone told me stillbirths happen in this day
and age." "My birthing class never mentioned it!" "I must have read every parenting
magazine and never saw anything about stillbirth!" For all those who never heard about
it, the National Stillbirth Society is here to tell the whole story. And lead not just stillbirth
mothers but all mothers and fathers in a campaign to "Stamp out SADS".




        Goal #5. Fetal Heart Beat Monitoring at Home

With the spread of the Internet Americans are finding themselves with access to
information that was tucked away in the stacks of medical school libraries for decades.
Pregnant women too are finding more sources of information than had been available to
them as recently as a decade ago. They're learning more about options and outcomes, and
the fact not all pregnancies produce cherubic "Gerber" babies as the various parenting
magazines would lead them to believe.

Home fetal heart beat monitoring is a case in point. Though the OB community is
generally not in favor of monitoring - let alone home monitoring - Dr. Jason Collins, an
NSS National Director and head of the Pregnancy Institute is developing a system for
home use that will provide real-time readouts of a woman's contractions and her baby's
heart rate as she sleeps. Connected to the Internet through a laptop computer, the monitor
will be capable of sending an alert to a woman's physician on his or her PDA.

Dr. Collins believes pregnant women who have been identified as being at risk of
stillbirth due to FHB decelerations should be using a fetal heartbeat monitor during
maternal sleep, the time when most stillborn deaths occur. He theorizes that because the
mother's blood pressure is lowest during this period, and because cord compression is
more likely when the woman is lying down - especially in late term when there is little
room for the baby to move - a monitor may have the potential to detect any dangerous
fluctuation or decline in the baby's heartbeat in time to allow for appropriate medical
intervention.

Babies don't "drop dead" in the womb. Fetal death is a process which can take up to
several hours. If an "alarm" sounds at the outset of the process - when the baby's heart
rate deviates from an expected "normal" range - the mother will become aware of the
problem. Will there be false alarms? Yes. But fire engines respond to all alarms. They
don't pick and choose which ones they answer. Could false alarms tax the resources of
the medical community? Yes. Could the community set up a "Rapid Response Protocol"
to expeditiously handle the inflow of concerned mothers? Yes. Could detection of a true
positive save a life? Yes.

Is there anyone with hypertension who has not been advised by his or her doctor to get a
blood pressure cuff and use it at home to monitor one's pressure? Why? To detect
dangerous changes between visits seems to be the obvious answer. Could not a home
fetal heart beat monitor do the same thing? Understand a layman, not a medical
professional, is asking this question. We are not qualified by education, training or
experience to give medical advice. But we are free to use our common sense. Do not
parents of newborns buy nursery monitors as a precaution against SIDS? Why would we
not want to take the same precaution for our baby in utero? Is our baby any less precious
to us because it has yet to be born? We think not.

If you're pregnant, discuss the subject of home fetal heart monitoring with your OB.
Understand the available equipment now is made for hospital use which makes it
expensive, however, you should be able to rent it if your OB supports your request. The
bottom line is that monitoring is a non-invasive procedure, not unlike taking one's blood
pressure. A sensor is strapped on the mother in the general area of the baby's chest and
connected to the monitor, which can sit on the nightstand. That's it. Is it a guarantee
against stillbirth? No. But how else is a mother to detect decreased fetal activity during
maternal sleep. Counting kicks is fine when the mother is awake. But who or what is
doing the counting when she is asleep? Once again, common sense!

We came of age in an era that taught its young people to "question authority". That may
be the right policy to follow when our health - and that of our babies - is at issue. OB's
see hundreds of patients every month of which you are just one. The likelihood that you
would be more aware of what is happening to and within your body is enormous. We all
have to take responsibility for our own well being and can no longer unquestioningly
accept pills and treatments prescribed for us. Until the medical community can tell us,
with certainty, what causes the two-thirds of stillbirths that now are said to occur for no
determinable reason; mothers may be as qualified as their doctors to decide what steps to
take to avoid this result.

DISCLAIMER: The foregoing is opinion, not medical fact, and is not offered as
medical advice. The decision to consider home fetal heart rate monitoring should
not be based upon this website. Our purpose in raising the question at all is to make
women aware of alternative pre-natal care options and to encourage them to discuss
the pros and cons of monitoring with their own OB's.
    Goal #6. Promote Specialty Clinics for Monitoring
                      Pregnancy

Promote specialty clinics for monitoring of a woman's pregnancy utilizing the "best
practices" protocol in place of the current "one-size-fits-all" standard now in use,
which is "set" by what insurers will pay rather than available technology and
medical need.

More and more these days we hear to all too familiar phrase, "Insurance won't pay for
that." We're not talking about experimental drugs mind you, or innovative procedures as
yet unproven. We're talking about common procedures being denied to patients by clerks
because a "demonstratable need" has not been established.

Unfortunately for stillbirth mothers, by the time the need is established, her baby is
already dead. That's because so many stillbirths occur without warning. Here one minute,
gone the next. If for no other reason it is cause for treating all pregnancies as "high risk".

Insurance companies are among the most powerful industries in America, with highly-
paid lobbyists who guard against just the kind of change we advocate. That's why in the
near term, until the need is demonstrated, women wanting to avail themselves of a "best
practices" pregnancy protocol can expect to pay for the additional screenings and tests
that will be a prime component of that protocol. Is there a mother alive today who would
not gladly have paid a premium for medical care if it meant she would have been more
likely to have avoided the stillbirth of her child?

There's an assumption made by pregnant women that the care they are receiving is
appropriate. In the majority of cases she would be right. And yet, though the medical
community is willing to "accept" a 1 in 115 loss ratio of stillbirth deaths, not so for the
mother who loses that one child.

When we board an airplane we expect to arrive at our destination. Mechanically, planes
are near perfect and losses due to mechanical causes are rare. With heightened security
the chance of falling victim to a terrorist plot is miniscule too. As a society we demand
such reassurance. Who would board a plane knowing we had a 1 in 115 chance of not
arriving at our destination. Women do it every day when they conceive. And that doesn't
even count the miscarriages.

We believe a woman should have access to the level of care and pregnancy management
she is willing to pay for, which is why we favor the establishment of specialty clinics
until a "best practices" protocol designed by doctors, not insurance companies, replaces
the "adequate care" model now in universal use.
         Goal #7. The Importance of Counting Kicks


Kicking is how
your baby tells
you it's "OK".
Perhaps
uncomfortable at
times for you but
reassuring. It
means your baby
is active and
growing.

In a survey
conducted among stillbirth mothers we discovered 67% weren't ever told by their OB
about the importance of monitoring kick counts. If you've not been told, or if it's not been
properly explained, raise the question at your next checkup. It's your body and your
baby’s so don't ever hesitate to voice your concerns. Counting kicks is a simple test to
determine your baby's health that costs you nothing.

You can track your baby's activity by using a written log of its kick counts. If you detect
a change, either a decrease in movement, or an unusual increase in your baby's level of
activity, it may mean your baby is in distress. Should either occur, call your doctor at
once. If you can't reach your doctor, head to the hospital to have your baby checked. A
"false alarm", if it is one, is better than having a stillborn baby.
Before starting your activity log be aware there's no single "standard" for the number of
kicks to expect, but on average you should detect at least 5 definite movements per hour.
Babies sleep, and there may be times in the day when you feel little or no movement.
That's why it's important to be aware of any changes in your baby's daily pattern. In time
you'll get used to your baby's particular patterns.

MEASURING KICK COUNTS

Every day at the same time, preferably just after you've eaten, take time to be aware of
your baby's movements. You needn't stop what you are doing, just be aware and count
each movement as you detect it. If you haven't felt at least 4 or 5 movements by the end
of an hour, you'll want to redo the count, this time lying down on your side and focusing
on just counting movements. We call them "kicks" but punches, rolls and swooshes
count, if it is a definite movement. You will hear that babies slow down as they get closer
to full term. Whether that's true is debatable, but if your baby slows down, the change
should not be sudden. A sudden change is trouble.

If, after redoing the kick count, you don't detect 10 movements within 2 hours its time to
call your doctor. From a practical standpoint it's always easier to be seen and have your
baby checked during office hours, but don't let the time of day stop you. If you detect a
decline in movement, call, no matter what the time. We've all been taught to be
considerate of others but this is a different situation. Doctors, like firemen, have chosen a
24-hour occupation. You've chosen to become a mother. As a mother your job is to
protect your baby. Pick up the phone and call at once. The next morning could be too
late.
      Goal #8. National Center for Stillbirth Research

Create a private sector "National Center for Stillbirth Research" to serve as a central
repository for extant stillbirth data, case studies, published articles, and related
information. Build a knowledge base that to comprise the core information needed to
facilitate empirical analysis into the causes of unexplained stillbirths, the area of stillbirth
most likely to lend itself to simple eradication.

Grass fires are easier to extinguish than forest fires. And the stillbirths of late term babies,
who are "perfect" in every respect and whose death defies diagnosis, should be capable of
being prevented easier than those wherein fetal death is the result of an identifiable cause.

"Unknown causes" are said to exceed stillbirths for identifiable causes. That means there
are 15,000+ babies dying for no apparent reason. The prevention of stillbirths for known
causes, and the development of treatment protocols for women who have been diagnosed
with one of the known causes, may exceed the fiscal capability of a private center. With a
$1.3 billion annual budget the National Institute of Human Development has more money
to devote to the search for the obscure and presently untreatable conditions that tend to
cause stillbirths, and for that reason we will work cooperatively with them sharing our
research and offering input on theirs.

The NCSR will primarily engage in empirical studies using the knowledge base acquired
from national and international sources, and as funds become available, will venture into
such medical research as may help uncover the cause of late-term stillbirths where there
has been no determinable cause found.




                  Goal #9. Promote Organ Donation

A part of us dies when our baby is born still, and yet there is a chance for a part of our
baby to live on. Not all parents of stillborn infants will get this chance to make a
difference in the life of another mother's child, but for those who do it can be a very
gratifying and comforting act. We're talking about the decision to consent for donation of
your baby's heart valves.

When our daughter was stillborn the hospital staff presented us with this opportunity, as
they're required to in many states. It was hardly necessary for my wife and me to speak a
word. We knew in an instant that this was the right thing to do, to offer a life lost in order
that another mother's child might be saved.
There is a 24-hour window-of-opportunity from the time of fetal death (not delivery)
beyond which the heart valves cannot be used and so the decision is not one parents
would be able to "sleep on". In the case of our baby, our consent to donate was requested
about 18 hours after her death. As the Donor Network of Arizona was preparing Camille
for the procedure, a freak lightning storm knocked out their power. By the time it came
back on a few hours later, too much time had elapsed so we were denied the satisfaction
of knowing Camille had saved another baby's life. But at least we were able to take
comfort in the knowledge we tried, Camille, her mother and me.

There is nothing that needs to be done to prepare for this eventuality. If a woman suffers
a stillbirth and the baby is a candidate for donation, the hospital staff will make the
request. All we suggest is that mothers and fathers understand they mean no disrespect by
asking; the decision is a very personal one and there is no right or wrong answer. It's just
something to consider.




           Goal #10. Nationwide Network of Parents

The defeat of stillbirth is going to take the combined efforts of all bereaved parents. Just
as the Mothers Against Drunk Drivers (MADD) was founded by a bereaved mother who
empowered other parents to bring about changes in the drunk driving laws, we too must
do the same.

Until parents demanded change, drunken driving remained a national joke. And until
stillbirth mothers and fathers demand change, our babies will continue to be
regarded as "fetuses", a form of medical waste. Can we honestly expect legislators
or even the public to get worked up over the loss of a fetus? The medical community
would like to keep it that way.

Introduction of stillbirth legislation is easy. It's gaining passage that is difficult.
Lobbyists, handsomely paid to protect their client's interest, lurk in the hallways, ready to
tell any legislator who will listen, why our legislation is the worst thing to happen since
Mike Tyson bit off Leon Spink's ear in Las Vegas. They'll complain about cost, they'll
complain about complexity, they'll complain about everything but the truth. The medical
community doesn't want anyone to know that stillborn infants are babies, not
fetuses.

If you think they're against Certificates of Birth Resulting in Still Birth, imagine how the
doctors and hospitals will rear up when we gear up to demand universal access to post-
mortem stillbirth evaluations at no cost to the families. But the knowledge that will come
from such a program is the only way we are ever going to be able to identify the causes
of so many unexplained stillbirths. The feds didn't hesitate to allocate announced
$106,800,000 for polio eradication in FY 2000. Now they can allocate it to stillbirth
instead since the World Health Organization has announced polio will see its last case in
2003. Gone from the face of the earth! Should not stillbirth be the next priority?

In New York State horses that die under the care of a veterinarian must receive an
autopsy administered by an independent examiner. Imagine that if you will; New
Yorkers apparently care more about finding out why racehorses died than why
babies are stillborn! That's obscene.

National Stillbirth Society is building a grass roots lobbying team state by state,
designating a member in each state to serve as the Coordinator for that state. The ideal
candidate possesses organizational and communication skills and is comfortable dealing
with people. It would be helpful if the person who offers to help were familiar with the
legislative process but that skill can be taught. Finally, the Coordinator must be willing
and able to attend key hearings at their state legislature as Bills we introduce make their
way through the legislative process. And be able to speak to the media about stillbirth
issues, from the Society perspective.

We've listed all 50 states on the Legislative web page with hyperlinks to those that
already have coordinators assigned. We encourage readers to contact the coordinator
listed for their state. Or, if there is no coordinator listed, consider volunteering for the
position. The pay is non-existent but the satisfaction of changing America's attitude
toward stillbirth is priceless.

Remember, if you're qualified, and your state doesn't already have someone designated -
which is most of them at the time this is written - drop us an e-mail and let us know of
your interest in filling the slot. But first, go to the Legislative Update page to see if there's
an opening.
   SURPRISING FACTS ABOUT S.A.D.S.

We’ve all heard about SIDS – the sudden unexplained death of babies in their cribs that
occur for no determinable medical reason. In 2000, there were 2,181 SIDS deaths
reported in the United States. That year there were over 26,000 S.A.D.S. deaths reported,
almost 12 times as many.

S.A.D.S. stands for Sudden Antenatal Death Syndrome, better known by the familiar
term, stillbirth. Medically speaking, stillbirth is the death of a baby in its mother’s
womb, after 20 weeks gestational age and up to the moment of delivery, which is when
many die…. at the “finish line”!

Stillbirth is unpredictable and random, and often strikes like lightening in a thunderstorm.
There is no way to know if or when or where it will strike next. The reason it is
unpredictable is because half to two-thirds of all stillbirths occur for indeterminable
reasons, and cannot be attributed to a specific identifiable medical cause.

Because of its randomness, and the lack of any warning, stillbirth, is said to be "An Equal
Opportunity Destroyer of Dreams". It cuts across socio-economic classes, races,
religions, body types and maternal age groups. No woman is immune from this "last great
mystery of obstetrics". Even women who have had several successful prior births can
experience a subsequent stillbirth.

That so many stillbirths occur at or near late term - when the developing baby is well
beyond the point of viability and could survive outside the womb - is especially
devastating, leading mothers and their doctors to speculate what might have been had
their baby been delivered earlier.

Autopsies, when performed, rarely uncover any cause of stillbirth not already apparent
from a physical examination of the baby and placenta.

There is no uniform stillbirth post-mortem (autopsy) protocol in use today anywhere in
America. Every autopsy is done according to local practice. Because of that there is no
uniform data available for analysis.

When a post-mortem procedure is performed, it is rare for the mother to be interviewed,
in spite of the fact she may have vital clues to her baby's cause of death. A uniform
protocol would address this shortcoming.

There is no centralized repository for autopsy data that could permit the analysis and
comparison of results, if and when an autopsy is performed. Imagine the chaos if police
kept fingerprint cards in each department's file cabinet. Crimes would never be solved,
just as stillbirth isn't being solved because the data - when autopsies are performed - is
not made available to researchers but kept at each hospital, if kept at all.

Technologies that offer promise of identifying life-threatening events for the developing
baby are being challenged by doctors rather than studied, such as home fetal heartbeat
monitoring. It’s not 100% conclusive, but it certainly is worthy of further study.

An affordable fetal heartbeat monitor - intended for use at home where 99% of all
stillborn babies die - is under development using technology developed by NASA for
monitoring the heartbeat of astronauts.

The practice of “counting kicks” – fetal movements – is a low-tech test women can do at
home on a regular basis. By monitoring her baby’s rate of activity she can identify any
sudden change and immediately have her baby evaluated. Sudden changes are often a
sign that the baby is in some form of distress, generally involving the umbilical cord.
(The National Stillbirth Society has published a brochure entitled “Kicks Count” that is
available for download free of charge elsewhere on this website.)

There is virtually nothing a woman can do to cause the stillbirth of a baby in late term.
Late term stillbirths remain a case of "natal roulette", played by nature, and as deadly as
the well-known "Russian Roulette".

After suffering a stillbirth it's not uncommon for former close friends to become
estranged, and for strangers become one's new close friends. Even family members often
become estranged. Few know how to deal with bereaved parents so they simply avoid
them. A tragic mistake.

One in every 115 babies delivered is a dead baby. If births were like aircraft landings,
Phoenix, with about 600 landings on the average day, would have 4 fatal crashes every
day. How long would that be allowed to go on? And yet we allow 70 pregnancies to
“crash” daily.

Founded in July 2001 by a bereaved father, The National Stillbirth Society is the first and
only parent-led stillbirth advocacy group in the United States. We have the only Internet
website dedicated to "educating and agitating" for greater awareness, research and
legislative reform.

In fiscal year 2000 the federal government allocated $106,800,000 in funding for polio
eradication! How many Americans died of polio that year to justify this lopsided
allocation of resources? (Recently the World Health Organization announced polio is
extinct in Asia and Europe.)

Despite vast sums being spent on polio eradication, we know of no significant
government supported research at this time to look into the cause or causes of stillbirth at
the federal, state or local level. To our knowledge there is no significant stillbirth
research ongoing at our nation's medical schools either.

A birth defect is as an impairment of an essential life function! But the March of Dimes,
our nation’s leading charitable research organization, that claims to combat birth defects,
doesn't regard stillbirth as a birth defect! What's a more essential life function than a
beating heart? It’s amazing but true. Stillbirth is not on their agenda!

Mothers who suffer a stillbirth do not receive recognition in 44 of 50 states. Only
Arizona, Utah, Indiana, Iowa, Kentucky and Massachusetts give these mothers a
Certificate of Birth Resulting in Stillbirth. Birth is a process, live or dead is a result. Why
would any state issue a "Certificate of Live Birth" to one mother, and not a "Certificate of
Still Birth" to the other? Both mothers did the same work, only the outcomes differed. A
mother of identical twins, who delivers one "still" is given a Certificate of Live Birth for
the surviving twin, but nothing for the stillborn twin, rendering the birth of that child all
but "invisible", and a non-event!

Official recognition for stillbirth mothers by issuance of a Certificate of Still Birth was
opposed (amazingly) in the California Assembly during the 2002 Legislative Session by
the American College of Obstetricians and Gynecologists, Planned Parenthood, the
American Civil Liberties Union, and the California Medical Association. ACOG wrote a
letter in opposition dated April 4, 2002 that is truly shameful, even obscene!

Upon reflection it’s likely that Dr. Spock, who advised mothers to put babies to sleep on
their tummies for decades, may have been responsible for more dead babies due to SIDS
than any other cause. In the absence of research, how can we be certain stillbirth mothers
aren't getting the same bad medical advice too? We know from a survey we conducted
that the majority of OB’s don’t tell pregnant women about the value of tracking their
baby’s kicks. What else aren’t they telling them?

Until we identify all causes of stillbirth, there can be no cure. Until there is a cure, there
can be no peace. Women’s babies will continue to be at risk, subjected to nature's
"reproductive roulette", wherein the majority are lucky, but 26,000 a year aren't.

Mary Tudor (aka "Bloody Mary") was born in 1516 to Catherine of Aragon and King
Henry VIII. Catherine of Aragon is reported to have suffered six stillbirths, the last in
1518. Mary Tudor, who later became Queen Mary, was their only child of theirs to
survive. How might the history of England – which she ruled as Queen - been different if
one of Mary's older siblings had survived? She would not have been Queen. How might
history have been different if Stalin, Lenin, Hitler or Pol Pot had been stillborn? We'll
never know.

The Pharaoh Tutankhamen and his Queen had two stillborn babies whose mummified
remains were found preserved in Tutankhamen's tomb, proving that stillbirth is at least as
old as the pyramids, and not any closer to eradication after almost 5,000 years!
                Stages in Fetal Development
ZYGOTE
A product of conception in the first 8 days following fertilization.

EMBRYO
The next stage in human development through 8 weeks gestational age.

FETUS
The next stage in the development of a human embryo, commencing 8
weeks after conception and continuing through week 27 of gestational
age, during which time all of the essential organs, limbs and brain are
formed.

VIANATE
A fully developed fetus in the third trimester of gestation, which is capable of
supported life and continuing growth to maturity outside the womb.


NEONATE
A baby in the first month of life following birth.


INFANT
A baby in the first year of life.


Search all you want but you won’t find the term “vianate” in
Webster’s, or anywhere else for that matter except on this website.
That’s because it was “coined” by The National Stillbirth Society to
differentiate between viable and non-viable fetuses. To call an 8 pound
41 week baby that is stillborn a fetus is absurd. Hundreds of new
words enter our language every year as we and our society evolve.
The need for this new word is long overdue.

The medical community still uses the term “fetus” to describe the
entire continuum of developmental growth of a human embryo, from
the time it’s no bigger than a lima bean, until it is delivered and takes
its first breath, a period of some 30 weeks, during which time
phenomenal changes occur within the womb as the embryo grows to
1000 times its size. And yet this same medical community recognizes
three distinct stages of development that span the first 8 weeks of
development: zygote, embryo, and fetus.

The National Stillbirth Society believes that once a developing fetus
attains viability in the womb it is sufficiently different from a non-
viable fetus to warrant recognition of that transition. Henceforth we
will always use the term “vianate” to describe fetuses, which, with
proper medical care, are capable of survival and growth outside the
womb.

There is no “bright line” as to when this transition occurs. Some
fetuses as early as 22 weeks and a few days have survived, while
others 25 and 26 weeks haven’t. Since every added week beyond 22
weeks enhances the odds of survival, and to avoid any debate that
might result from our drawing the line too optimistically, we have
chosen the onset of the third trimester as the dividing line, beyond
which viability is practically assured for a healthy fetus. Therefore, we
refer to all third trimester fetuses as “vianates”.

The term vianate is a medical definition. In our hearts, however, they
are neither fetuses nor vianates. They are - and always will be - our
babies.




   The direct dial number for The National Stillbirth Society is 602-216-6600.
     The direct e-mail address for the Executive Director is rko@cox.net

				
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