A Message to the Medical Community on Mother’s Day
It is not often I read a research article that I think would be appropriate reading for multiple audiences. There is a recent study, however, that I believe should be read by anyone who works with or loves families who are impacted by stillbirth.
Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth – a qualitative analysis by Maureen C. Kelley and Susan B. Trinidad was published in BMC Pregnancy and Childbirth in November 2012. The study was part of a needs assessment completed by the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS).
I encourage you to read it (available here). There are many pearls and insights that can help us understand stillbirth families, obstetrics providers, and ourselves.
Among many fascinating findings, the authors identify the need for families and health care professionals to work together regarding many of the issues surrounding stillbirth. This is not a concept that is hard to understand or one that should be a significant challenge. But it is one that needs to be adopted! Kelley and Trinidad point out that the stigma and taboo associated with stillbirth create a significant concern for families after a stillbirth and impacts how health professionals are willing or able to care for their patients during a most difficult time.
With Mother’s Day quickly approaching, I felt like this was an appropriate time to read this particular message. The taboos and stigmas around stillbirth can multiply the pain felt by grieving families on holiday such as these. Many, many parents have asked themselves if they really ARE a parent if their only child has passed away. It is heartbreaking that this is even a question in our society. Are you still someone’s son or daughter if your parents die? Of course! So, why would we think the title of parent doesn’t apply in cases of pregnancy or infant loss? This is just one of many issues addressed in this article.
One of the best Mother’s Day, Father’s Day, or Any Day gifts we can give to parents of stillborn children is to recognize all of their children. This starts by bringing stillbirth out of the shadows. The above article highlights the people who can lead the charge – our health care professionals. By being the first people we encounter during loss, they can set the tone and model appropriate care for other health professionals, our families and friends, and our communities. By speaking up about the issue and the need for better answers and prevention, they can unite with families who feel powerless in the medical environment. By being leaders in our society, they can call for and inspire change of the social stigmas and sociopolitical issues that often make a tragic situation even worse.
Thank you to BMC Pregnancy and Childbirth for publishing this study and Kelley and Trinidad for bringing research to this topic. Thank you to the parents, health care providers, or organizations that are already doing your part. Thank you to those of you who recognize that YOU can make a difference!
“What’s the truth about cord accidents?”
I was asked this question earlier this week. And it’s a very good question. There are so many conflicting thoughts, ideas, and beliefs regarding the role of the umbilical cord in stillbirth. So why is there so much confusion? And, what is the truth?
The truth is that umbilical cord accidents CAN cause stillbirth. There are numerous studies that have shown this to be the case. The percentage of stillbirths caused by cord accident is not as clear. Depending on the study, it can range from 5-30% of all stillbirths. The Stillbirth Collaborative Research Network (SCRN) of the NICHD recently published well-respected results from their comprehensive, 5-site study. In this paper, 11% of the stillbirths studied were attributed to cord issues. This is a significant number, but it is also likely to be a conservative number because they required physical evidence of a cord accident to be present during autopsy for this diagnosis.
There are many types of umbilical cord issues that can cause problems. The more common issues include true knots, velamentous or marginal insertions, hyper or hypo coiling, lack of Wharton’s jelly, 2-vessel cords, and compression. Characteristics like long cords, short cords, nuchal cords, or body loops may not directly cause interruption in the blood flow, but they present a situation where compression may be more likely.
Why do so many people insist that cords (especially nuchal cords) don’t cause problems? I think it’s because most OBs and midwives have seen hundreds of healthy babies that are born with nuchal cords (the cords wrapped around the baby’s neck). This leads many people to believe that it’s not a big deal. The problem is that it CAN be a big deal for some babies. Just because it isn’t a problem for ALL babies, doesn’t mean it isn’t a problem. I know people who smoke and don’t have lung cancer. That doesn’t mean that smoking is safe. The second issue with this is that nuchal cords are just one type of cord issue that could be problematic.
Why are cord accidents difficult to diagnose? There may be physical evidence of cord compression or other type of cord accident present after birth. However, this is not always the case. Plus, many stillbirths are not evaluated by someone trained in placenta and cord pathology to identify this evidence. In fact specially trained placental pathologists are few and far between.
Another significant problem in diagnosis is that we lose possible evidence with delivery. It is almost impossible to know (or even guess) where the cord and all other structures were when a problem occurred if we only look at the baby and cord AFTER they have been delivered. I think all stillbirths should have a comprehensive ultrasound at the time of diagnosis to evaluate the umbilical cord, baby’s position, placental location, and amount of amniotic fluid. This is information that is impossible to determine if we don’t look at the “scene of the crime” before it has been disrupted by the birth process.
With all of these issues, why are so many parents told that an umbilical cord accident was the cause of their child’s death? This is a very good question. Anecdotally, I hear much more than 11% of stillbirths being attributed to cord accidents. Personally, I think this may be true in many of these cases. I also think it feels like an ‘easy’ answer to give parents. It is relatively simple to understand (as opposed to genetic alleles and complex medical conditions) and doesn’t appear to require a lot of explanation or proof for most families. Plus, the term ‘accident’ gives the impression that is wasn’t anybody’s fault or that it was a freak occurrence – wrong place at the wrong time type of scenario. I’ve heard people say the word accident makes it less likely the parents will blame their providers, and also that it brings a sense of closure if it’s “just one of those things”. Regardless, it should not be a default diagnosis because it’s easy. If that’s really the best educated guess of the provider, then this should be explained to the family.
I am also very irritated by the connotation that nothing can be done about issues called accidents. In many cases, there are signs or symptoms that are not identified or addressed. What these symptoms are and how they should be managed is not something I’ll get into here – but we need to start having frank discussions with expectant families and loss families about symptoms they have/had and if they could be signals of a baby in distress.
If it’s so simple, why is there so much confusion about cord accidents?? I think this is the result of the above issues in combination. During pregnancy, parents are told umbilical cords don’t cause problems. But if a loss occurs, many of these same parents are told that a cord accident is the likely cause of their child’s death. We can’t have it both ways.
How do we clear up the confusion? In my opinion, several things should happen.
- First, we need to STOP telling expectant parents that cord issues aren’t a cause for concern.
- Second, we should be encouraging families to have the baby (or at least the umbilical cord and placenta) evaluated after a stillbirth to attempt to identify the cause of death without guessing.
- Third, we need more information about how to identify these cord issues and how to manage them – this needs more research.
Until we have more research, we should be looking for signs of distress in pregnancies, and we should be looking at umbilical cord characteristics during any and all ultrasounds. If cord issues or distress are identified, the parents deserve to be told and it needs to be addressed immediately. Our OBs and midwives deserve more research and education to guide them in prevention of stillbirth from cord accidents.
With the highly sophisticated medical technology available today, I firmly believe this is a cause of stillbirth that is highly preventable! We need to work together to make it happen!
Help us learn more about umbilical cord accidents and all stillbirths – PLEASE participate in the STARS Study and encourage others to do the same. We need women who have EVER had a stillbirth after 28 weeks gestation, women who have had a baby in the last 3 weeks, and women who are currently pregnant (28 weeks or more).
Click on the logo on the left or go here to participate: http://starlegacyfoundation.org/stars1/
We can be part of the solution!
Obstetrics from a Pediatric Perspective
A frequent frustration of families who have endured a stillbirth is the feeling that their OB or midwife wasn’t worried about the baby until the actual delivery, or until it was too late. The health professional in me defends these providers and wants to believe this isn’t true. However, I also understand that “perception is reality”.
So, why do so many families have this perception? I believe the answer is easy if we look at obstetrical care from a pediatric perspective.
I’m a pediatric nurse practitioner. Most of the information I need to do my job comes from the parents (especially with infants and young children). I was thinking about this recently as I heard stories from several different moms and their experiences with their OBs.
Example 1: Many women report that they were not told about kick counting. Even if they were, they were not given information about how to do it, why it is important, when to be concerned, or what if they are concerned. When I ask OBs and midwives about this, the most common answer is that they don’t want to scare their patients.
I can appreciate this – but I also would argue that this is their job! I don’t enjoy talking to new parents about trying to protect their child from SIDS – but it’s my professional responsibility. OBs and midwives don’t like to make their patients think about breast cancer, but they overcome that discomfort to teach women about self-breast exams. Education is a significant part of the job description. Every pregnant couple needs to be told about stillbirth risk factors and how to observe their unborn baby for signs of distress.
Example 2: A woman who is 34 weeks pregnant comes to the OB office and reports that her baby isn’t acting like she usually does. The mom feels like something isn’t right. She can’t put her finger on it and she doesn’t have any of the symptoms listed in her pregnancy books (fever, bleeding, cramping, etc). The nurse’s response is that this is a common feeling toward the end of pregnancy and the woman shouldn’t worry about it. She mentions it again to her OB who listens to the baby’s heartbeat with a Doppler, reports that it is normal, and reassures her that all is well.
As a comparison – A mother brings her 8 year old child into the pediatrician’s office because she isn’t acting normally. No specific symptoms exist, but the mom says she just isn’t herself and mom is worried. As a pediatric provider, I need to do a complete physical exam and consider multiple tests to identify what could be going on. If all I did was listen to this child’s heart and send them home, I’d meet some very angry parents and setting us all up for the potential of something important to go unnoticed! It’s hard to reassure concerns parents that all is fine because the baby’s heart is beating at a normal rate. Obstetrical providers need to thoroughly investigate every concern that a mom mentions. Falling back on old wives tales isn’t good enough with the technology available today. Yes, there may be false alarms, but I like to remember that the fire department doesn’t dismiss any of their alarms as ‘probably nothing’ – they treat every alarm as though it were a four alarm fire until proven otherwise.
Example 3: If an obstetrical provider is concerned about a baby’s growth, measurements may be taken during an ultrasound to estimate the baby’s size. If these results are plotted on growth charts and found to be below the 10th (or sometimes 3rd) percentile for gestational age, the diagnosis of Fetal Growth Restriction (FGR) or Intrauterine Growth Restriction (IUGR) is made. Many providers will tell you that this can be a ‘false positive’ because there are some babies that will be smaller and this particular size is their ‘normal’. This is true. However, the reverse is also true. There are many babies that genetically are bigger babies, and a percentile above the 10th may represent abnormal for them.
In pediatrics, we follow growth charts using similar percentile calculations. However, we track them every time the child is seen for a well-visit (and sometimes more often). We watch the trend. If a concern is found, a diagnosis of Failure to Thrive might be made or there will be additional evaluations completed to identify any problems. In general, we are concerned about a child who has been following a specific percentile and suddenly or consistently drops down. For instance, if a 6 month old child has been at the 75th percentile for weight for the last 6 months and is suddenly at the 25th percentile – we are concerned. Using the definitions of IUGR or FGR, we wouldn’t need to be concerned about this child because he is above the 10th percentile.
The biggest difference here is that in pediatrics these measurements are taken with every visit. This is not the case during prenatal care. OBs monitor baby’s growth by measuring the size of mom’s uterus with a tape measure and tracking mom’s weight gain. Yet, it is widely acknowledged that these methods are affected by many other factors and are only minimally helpful. The practice of growth charting for every unborn baby should be routine part of prenatal care utilizing more than a tape measure. In addition, the threshold of 10% should be abolished in favor of trending for that particular baby.
Example 4: A pregnant woman has a Doppler at home to monitor her baby’s heart rate. At 36 weeks, the mother calls the OB concerned that the baby’s heart rate is 20-30 beats per minute lower than his usual and the number of fetal movements is also decreased. When she arrives at the hospital for evaluation, the monitor reveals that the baby’s heart rate is normal and the mother is reassured and sent home.
As a comparison – a father of a 2 year old child notices the child has a temperature of 102 degrees and is complaining of ear pain. He gives her a dose of Tylenol and takes her to the pediatrician’s office. By the time they arrive, the little girl is smiling, playful, and her temperature is down to 99 degrees. This child will still be evaluated as if the symptoms that Dad noticed at home were still present. I can’t dismiss Dad’s report just because the child’s status has changed. Obstetrical providers need to assume the issue was present and do a thorough evaluation over a number of hours of more than the baby’s heart rate to see if the reported issue will repeat itself.
As a medical professional, I know that there is much more that goes into medical decision making than usually meets the eye. But these stark differences between how we monitor, evaluate, and treat children before and after birth represents a problem. The amount of credit we give to maternal instinct and parental intuition before and after birth discredits the relationships that parents build with their unborn children.
In decades past, providers were very limited in how much they were able to monitor, evaluate, and treat babies before birth. Fortunately, technology today gives us many more options. Unfortunately, the standard of care during pregnancy has not kept up with technology.
When the information that parents bring to the table is ignored, it is easy to see why they think their child is being ignored. Obstetrical providers must always remember they have TWO patients!
I encourage all obstetricians and midwives to treat their unborn patients as aggressively as pediatricians or pediatric nurse practitioners would treat the same child after birth. I encourage parents to express your observations and concerns. Ask that your unborn child receive the type of care he/she will receive after birth.
Babies, before they are born and after, will receive the best care when parents, providers, and technology all work together!
Shhhhhhh…..We can’t say the “s” word!!
If you have not yet read it, I encourage everyone to read the recent article in the New York Times titled, “Breaking the Silence of Stillbirth”. This article is very well-written and puts into words many of the same emotions I tried to express in my last blog. The author, Sarah Muthler, also includes a statement that jumped off the page at me:
“Can we find a way to talk about stillbirth – to educate – without being fear mongers?”
When I discuss stillbirth issues with health care providers, they always tell me they avoid mentioning the word ‘stillbirth’ or any of the surrounding topics to their pregnant patients because “it will just scare them”. In my mind, there are so many things wrong with this line of thinking that it just infuriates me.
First, I think it’s insulting that providers don’t believe that pregnant women are capable of evaluating risk – especially risks that may affect their health and the health (and life) of their child. We offer screening tests for genetic disorders, we do ultrasounds looking for major anatomic abnormalities, we screen for signs of eclampsia and gestational diabetes. For me, these are all scary to think about, but knowing they exist and approaching them in a proactive manner actually empowers women and their families.
Second, it is their JOB to discuss all health issues with their patients. The health care industry exists because we need advice and assistance to achieve/maintain health. In my pediatric practice, it isn’t fun or easy to talk to parents about the risks their child has of SIDS, autism, developmental delays, or any other condition. But the risk and the reality of it doesn’t go away if I ignore it! I feel I increase the risk if I don’t tell my patients everything I can so that they can try to reduce the risks when possible or be more vigilant if not. It’s about education – not scaring.
Third, providers need to recognize that their patients know they can’t guarantee a perfect outcome – especially if risks are identified. Performing colonoscopies on high-risk patients doesn’t make them immune to colon cancer. It simply helps us identify if they have additional risk factors and attempt to intervene early if signs are noticed. Similar examples exist throughout medicine in all specialties. We understand an obstetrician or midwife can’t promise our child won’t be stillborn, but they CAN look for early signs and symptoms or be more vigilant with those pregnancies that have high risk factors.
Fourth, so many of the issues surrounding stillbirth stem from it being a taboo subject in our society – which begins at the doctor’s office! There is little research because very few people are funding the research. Funding seems to only follow those issues which our society addresses as a problem. Very little patient education takes place because health care providers don’t want to talk to their patients about it and don’t feel they have good answers to all of the questions – again influenced by the lack of research. Once a stillbirth has occurred, the families often receive many painful comments or later agonize over regrets because it is such a foreign concept to so many people. Common knowledge about how to care for these families, how to respond to them, or how to advise them is lacking just as much as the prevention information. Over and over again, stillbirth families tell me that they didn’t realize this could even happen. I am one of them!
If you want to know what scares pregnant women – talk to stillbirth mothers and families about what they were told or what they experienced after their stillbirth. That is when families are given all the information, scary or not, to process in a very short time while also managing their acute grief. Meanwhile, the families often can’t get past their first question -
“What is stillbirth and why didn’t I know about it?”
Immediately after being told our children have died, couples are often given “warnings” about what to expect next. For example, I was told I could be in labor for 3 days or more to deliver my child who had already passed away. Some families are told they must now make very difficult decisions to save the life of the mother – that’s scary. Telling a family they will now have to live with a hole in their heart for the rest of their lives and create a “new normal” because they will never be the same people again is very scary. It is devastating to a family when they realize many of their friendships or family relationships will now change or disappear because of various reactions to stillbirth and grief. Telling a couple that any future pregnancy has a similar (and probably higher) risk of stillbirth can be scary. And that doesn’t start to address those who are told they can’t/shouldn’t/likely won’t ever have another child – that their only opportunity to parent a living child disappeared due to a condition they didn’t even know exists. Our society and health care professionals should put their energy toward preventing women and families from enduring pregnancy and infant loss instead of protecting them from the “S” word – stillbirth.
We know this can change because it has changed in other areas of medicine. Not long ago, there was a similar societal taboo about mentioning certain body parts. I have a great aunt who died from “female cancer.” I can only assume it was ovarian, uterine, cervical, or breast cancer – but I don’t know. That has changed. Today, we have news anchors reminding women to do a monthly self-breast exam, we have vaccine commercials talking about the risks of cervical cancer, and we have Facebook posts warning of the signs of ovarian cancer. We even have the entire NFL – an organization of men – wearing pink and raising money and awareness for breast cancer. All of these actions (and many more) won’t stop cancer from afflicting all women in these ways. It does however, educate us all, raise money for better research, inspire more women to be mindful of early symptoms or risk factors, and help provide better societal support if someone is diagnosed with one of these cancers. It doesn’t have an entire population of women running around beside themselves with worry, but they are enlightened and empowered as much as possible. The same can happen with stillbirth if we start talking about it!
What do you think? Did anyone say the “s” word to you?
If they had, would it have scared you or empowered you?
Take our poll here – let’s see what everyone thinks……
Redefining Friendship After Your Baby Dies
by Lindsey Wimmer, MSN, CPNP -Executive Director, Star Legacy Foundation
Even almost eight years after my first child was stillborn, I still find myself in situations that take my breath away or leave me speechless. One of the more difficult situations that continues is the role I now play among friends.
To those who knew me before Garrett was born, I am not the same person I used to be. I can’t ever go back and have developed a “new normal”. I have accepted that, but it can be hard for others to understand or accept.
Forget-Me-Not
To those I meet now, I am frequently trying to decide if this is someone I should tell about ALL of my children, or save them the uncomfortable feeling of telling them why I only get to raise 3 of my 4 children. Parents who have lost a child know the look we get from strangers when we drop on them that our infant died. They are unsure how to respond because society doesn’t let us address this topic openly or provide any guidance. It isn’t their fault. Yet, if I try to spare them this moment, I feel I am not being true to myself or my son.Expectant parents, whether long-time friends, family, or new acquaintences, raise another challenge. Before I was pregnant with our second child, I know many friends who tried to hide their pregnancies from me or felt bad about telling me they were still pregnant and things were going well. I was living proof of their worst nightmare and I’m sure they didn’t enjoy seeing me during that time.
Many of these issues continue today. When I learn of a friend or family member who is expecting a child, I am always happy for them, but often feel obligated to encourage them to stay vigilant and do everything they can to protect their baby.
I feel like the grim reaper who always casts a dark shaddow onto a happy time.
I know I will hate myself if their pregnancy ends poorly and I didn’t tell them my story or encourage them to ask more questions about certain symptoms. How do I balance doing everything I can to protect my friends and their children without appearing to be a bad friend who has to consider the worst case scenario? At times I choose to put on a happy face, say congrats, and just silently cross my fingers that everything will be ok. I am again not following my heart, but falling to societal pressures to keep my baggage to myself.
Every person, every pregnancy, every grief is different. I now understand there is not a simple answer to these questions that are appropriate for every person or every one of their friends. If you are grieving, tell your friends what you need from them and how they can help you. If you are pregnant, listen to the lessons your grieving friends have learned and know that we only want to spare you the pain we have endured. In any case, embrace your friends for who they are – baggage and all!
Click here to learn how to help when your friends baby dies.
If you know someone who has lost a child and you’re afraid to mention them because you think you’ll make them sad by reminding them the child died…they didn’t forget they died. You’re not reminding them. What you’re reminding them is that YOU remember they lived and that’s a GREAT, GREAT gift.
~ Elizabeth Edwards
2012 in Review
Today, as I was working on the annual report of Star Legacy Foundation, I felt a bit like a super-proud mama that needs to talk about the accomplishments of our incredible team this last year ! The highlights fall into a few themes.
Involvement in Communities
We were able to finish revising our See Me Feel Me education program to include many of the emerging topics we find 
promising. The materials are now being used in dozens of hospitals and clinics around the country! In addition to this, we’ve been able to provide education events to health care professionals in multiple hospitals about stillbirth prevention and caring for families enduring a poor pregnancy outcome. These programs were accredited for nursing continuing education credits, and we are on our way to becoming an accredited nursing education organization ourselves.
The community of loss families met in Baltimore, MD in October for the ISA/ISPID International Conference on Stillbirth, SIDS, and SUID. We were excited to participate and honored to host the banquet where the NICHD was honored for 50 years of dedication to the health of women and children. This medical community is filled with extremely talented individuals, and it was a pleasure to meet and learn from some of them!
Our commitment to grieving families was the driving force behind our association with 11 Angels, an organization in the Minneapolis metro area providing companioning and grief resources for families beginning their journey of miscarriage, stillbirth, or neonatal death.
Community involvement today also includes the online and social communities! We have a facebook page and group and a brand new website that will be launched later this month.
Research Advancement
We were so pleased to see the publication of the BMC Stillbirth Summit 2011 Summary. The researchers who participated in the Summit continue to amaze us with their dedication to their work. It is exciting to hear how other researchers and OB practitioners are utilizing the information presented by these brilliant people. We thank the authors for their time and commitment to the project! We are also excited to begin work on the next Stillbirth Summit to be held in 2014! Stay tuned and watch our website for more information. If you’d like to be involved in this event, please let us know!
Many of the same researchers who participated in the Stillbirth Summit came together to help us create and launch a new research study – the Study of Trends and Associated Risks of Stillbirth (STARS) Study. This is an online survey designed to learn more about the experiences of families who have had a late stillbirth. We also hope to learn more about the risk factors associated with stillbirth. If you have ever had a stillbirth after 28 weeks gestation, are currently 28 weeks or more pregnant, or have delivered a healthy baby within the last 3 weeks, PLEASE contribute by completing the survey. Also, tell your friends and family who meet these criteria as well. The faster we have a large number of women participating in the study, the sooner we will be able to use results to improve stillbirth prevention research!
Collaboration
We were thrilled to work together with many of our friends in the stillbirth community this year. Stillbirth issues are incredibly complex and will require a great deal of resources of all types. There are strength in numbers and we believe that when we all work together, we will accomplish so much more than we can alone! This included meetings with Healthy Birth Day, the Iowa Department of Health, Babies Remembered, 1st Breath, state and federal legislators, Taylored to You, Missing GRACE Foundation, First Candle, Loss Doulas International, Foundation for Babies, too many bereaved families, and many, many more. We are honored to be a founding member of the Action for Stillbirth Awareness and Prevention (ASAP) Coalition. This group will be tackling the issues that require strength in numbers – and we invite you to join us! There is no commitment to join – just a desire to show your support to end stillbirth! Join here.
I hope you will join me in thanking the incredible people who made all this (and more!) possible! Our dedicated team includes our board members, leadership team, medical advisory team, champions, friends in the baby loss community, and families of children gone too soon. Special thank you to the many people and organizations who donated, held fundraising events, promoted our programs, and supported us in a variety of ways.
We are looking forward to 2013 and the many things we will be able to accomplish together. Contact me at lindsey@starlegacyfoundation.org if you’d like to join our team or support our programs and projects!
Wishing you all a healthy, peaceful, gentle, and successful new year!
Lindsey J. Wimmer, MSN, CPNP
Executive Director, Star Legacy Foundation
I feel so helpless!!
At one time or another, each of us has uttered this phrase or, at least, felt the sentiment. When we want to help or feel the urge to help a person or situation, it can be paralyzing if an obvious answer isn’t available.
I have felt this emotion many, many times when trying to advance stillbirth prevention efforts. Sometimes there aren’t answers to difficult questions. Sometimes the issues seem too big for a single person to attack. Sometimes I am thinking about ideas I’ve never considered before or that I know nothing about! Other stillbirth parents and advocates often express to me the exact same thoughts. While it’s comforting to know I’m not alone, it’s even more frustrating that so many people want to make good things happen, but aren’t able to for a variety of reasons.
However – I believe they ARE able to! And I have found a group that I believe will help relieve the helpless feeling so many of us have! Star Legacy Foundation is partnering with First Candle, 1st Breath, Babies Remembered, and representatives of stillbirth families (particularly Debbie Haine) to form a coalition that will address these issues. I believe there is power in numbers. When a group of highly motivated, passionate, and talented individuals work TOGETHER toward a common cause – nothing is impossible!! It also means we are no longer helpless!
This group is now known as Action for Stillbirth Awareness and Prevention (ASAP). While the groups mentioned above have started this effort, this is a group for EVERYONE. If you, your organization, your health care providers, your company, your family, or any other group believes that stillbirth prevention and awareness is important – we ask you to join hands with us. Together we intend to tackle many issues in this arena including stillbirth awareness programs, prevention efforts, encouraging research, advocating for families, supporting legislation, and more. There is no reason for us to sit back, suffer in silence, and feel helpless anymore.
So, what can you do???
First, join our efforts by showing your support through this online survey . This is to gather everyone together and be able to communicate more effectively. You are not required to make a donation or make any specific commitments – just show your support for stillbirth babies and their families. It will also serve as visible proof to legislators, financial supporters, health policy organizations, and others how many people see the importance of these efforts. Share the link with your friends and others you know who believe in this cause.
Second, “like” us on facebook and visit our website (www.stopstillbirthASAP.org)
Third, send us a note at info@starlegacyfoundation.org about what you think a group like this should address and how you’d be willing to help.
The above mentioned groups are gathering again this month to do more organizing and planning. At that time, we will begin asking for talents, resources, expertise, and support in many areas. Be thinking about how you would like to help or what you might have to offer.
I no longer feel helpless because I have seen and felt the passion and energy of thousands of people in the United States who think it’s not acceptable for 26,000 babies to be stillborn EVERY YEAR in this country alone. If all that energy is focused in the same direction and working together – we can accomplish more than we could imagine. Please join in!
Alone the best we can do is grieve, but TOGETHER we can do so much more.
