Newly formed NY Metro Chapter of the Star Legacy Foundation seeks prevention, research funding
Imagine you are pregnant. After a long but happy nine months, you arrive at the hospital only to be blindsided by the most devastating news possible: your perfectly healthy baby has died, and no one can tell you why. Then imagine that the next words out of the doctor’s mouth are that you’ll have to labor for several hours, only to deliver your beloved child’s dead body. And then you’ll leave the hospital alone, an empty child safety seat still strapped in the back of your car. And you’ll somehow begin the monumental task of picking up the pieces of your shattered life.
The horrific nightmare outlined above has a name: stillbirth. And believe it or not, it’s happened to an untold number of families in our local communities. The newly formed NY Metro Chapter of the Star Legacy Foundation is seeking to change this.
Each year, there are 2.6 million babies stillborn around the world, approximately 26,000 of those in the United States. It is 10 times more prevalent than Sudden Infant Death Syndrome (SIDS), and if included in causes of death, would rank 11th in the United States. However, as noted by prominent medical journals, stillbirth has not received attention relative to the scope of the problem.
Public health experts have called stillbirth “one of the last taboos” and “one of the most shamefully neglected areas of public health.” Indeed, thousands of stillbirth families will report feeling that the death of their baby before birth was considered “not to count.” The lack of funding, interest, and urgency in investigating and preventing these deaths — and the all too often inadequate support given by health professionals and society to families who experience a stillbirth — reflect these truths.
Affecting 1 in every 160 deliveries, according to the American College of Obstetricians and Gynecologists, stillbirth is one of the most common adverse pregnancy outcomes. Yet, it remains one of the most understudied and underfunded public health issues, even though, for example, there are twice as many stillbirths worldwide as deaths due to HIV/AIDS.
The worst part is that so many of these tragedies are potentially avoidable.
Approximately half of all stillbirths occur during the third trimester (after 28 weeks gestation), when interventions are more practical. Shockingly, one sixth of all stillbirths occur after the baby has reached term gestation. And heartbreakingly, a cause of death is never identified for as many as 70 percent of all fetal deaths.
Clearly, something needs to change. But change will never happen without increased funding for research and more open discussion about this tragic topic. The Eden Prairie, Minnesota-based Star Legacy Foundation is a 501(c)(3) non-profit organization dedicated to stillbirth research and education, and is on a mission to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth.
With no local organization driving progress on stillbirth in the heavily populated New York metropolitan area, it was imperative for the NY Metro Chapter of Star Legacy to form.
We are a passionate group of parents, families, and friends of stillborn babies who strive to save other families from the heartache we have suffered. We believe that through discussions with medical providers and expectant families, we can show others that we can do more to prevent such a needless tragedy. Along with the rest of the Star Legacy Foundation, our chapter has great hope for the future to prevent many stillbirths in the United States and around the world. Through our grassroots efforts, we can provide the education and partnership necessary to empower families and health professionals to identify and protect vulnerable babies.
We invite you to join us in our mission to save the lives of babies in our community and beyond. Register for our family-friendly 5K run/walk on April 17th in Port Washingtonm, NY and/or April 30th in South Salem (www.letsnotbestill5k.org) and learn more at www.starlegacyfoundation.org/new-york-metro-chapter/
Hilary Hughes is chair of the NY Metro Chapter of the Star Legacy Foundation.
Pregnancies are usually characterized into high-risk and low-risk categories. The ‘high-risk’ pregnancies are those that have documented and accepted risk factors for poor outcomes. They include concerns like anatomical and genetic abnormalities in the baby, multiple gestation pregnancies, pre-eclampsia, gestational diabetes, and some maternal health conditions. These pregnancies are often co-managed by a maternal-fetal medicine specialist and are followed using a protocol that involves additional testing and more frequent monitoring. The ‘low-risk’ pregnancies are any that don’t meet the criteria.
The stillbirth rates for ‘high-risk’ pregnancies are a fraction of what they are for ‘low-risk’ pregnancies.
According to the Society for Maternal Fetal Medicine, incorporation of this proactive care can decrease the rate of perinatal mortality from 8.8 to 1.3 deaths per 1000 births (Society for Maternal Fetal Medicine, 2010). The current US stillbirth rate is 6.1 deaths per 1000 births. That seems backwards because the label implies the higher rate would be in the ‘high-risk’ group. I believe there are many ‘low-risk’ pregnancies that could/should be managed by this same protocol.
There are many, many known risk factors for stillbirth and other poor pregnancy outcomes that don’t qualify for high-risk care. Included in that list are: maternal obesity, advanced maternal age, non-Hispanic black race, first pregnancy, maternal drug use, use of IVF or other reproductive technologies, umbilical cord or placental abnormalities, pregnancies over 40 weeks gestation, and a mother who had a previous poor pregnancy outcome (such as stillbirth, preterm birth, neonatal death). These women are not routinely given the opportunity to benefit from a higher level of care. We hear from women every week who are in these categories, yet they are reassured that there is no reason to be concerned. We also hear from women with these characteristics that are turned down as patients by maternal-fetal medicine specialists because they don’t qualify for that level of expertise.
Even more concerning are the women who have several of these ‘soft’ risk factors. A 40 year old, obese, African American woman who used IVF to conceive should make every obstetrician or midwife nervous. Yet, most will consider her ‘low-risk’. We don’t have a magic study that tells us how to prevent all poor outcomes for these women – but we can use common sense and take advantage of the tools available to try. At the very least, we can have an honest conversation with the family about these risk factors and work together to identify a plan that makes sense to those most involved and affected. One of the options would be to offer them a high-risk pregnancy management plan.
I am also concerned that the current management of many of these risk factors is to prevent them from being true. Of course – it would be great if every woman could choose to be pregnant before they are 35 years old, be an ideal weight, not need fertility treatments, and not use recreational drugs. But these aren’t always practical. And even so, not considering those issues as risk factors once a pregnancy is a reality for these women is unethical. We have to have a better approach to managing these risk factors, even if they are modifiable.
For the women who are managed as high-risk, the classification can also be challenging because their management is often centered on the one piece that earned them that status. A woman with gestational diabetes will be seen more often with diligent monitoring of her blood glucose levels, but may not have any attention paid to the effects on the placenta, be asked about her baby’s movements, or consider that this is her first pregnancy, she is 38 years old, and she is at 40 weeks gestation. These women often have a false sense of security because they know they are getting a higher level of care and assume that care is comprehensive.
The number one comment I receive during these conversations is this: “If we consider the entire list of risk factors, every pregnancy would be classified as ‘high-risk”. YES.
There is no such thing as a low-risk pregnancy.
Every mother, every baby, every pregnancy, and every family deserves the best we have to offer. Comprehensive, high-risk care protocols should be offered to every pregnant woman. The education about all those risk factors and an honest discussion about the options should be automatically provided for each pregnancy. Each family will decide how aggressive they want to be – and that is what medicine is all about. But keeping that information and those options from large numbers of women is not doing anyone any favors.
This is not to say that I believe this care will prevent all stillbirths or other poor outcomes. It won’t. And I don’t expect our health professionals to be super heros with super-human talents. I just want them to give their patients credit for being rational, intelligent people who simply want what is best for themselves and their babies. And that will look different for each patient. That is where the art of medicine comes into play. Having all the information doesn’t scare pregnant women – it empowers them.
Yes – there is a financial cost associated with much of this. However, it is impossible to put a dollar amount on the life of a baby and the grief experienced by a family if that baby does not get to go home with the family as planned.
I want our health professionals to worry about our HEALTH first, and our wealth second.
This is part of the conversation, but families need to know their risks and have information about the pros and cons of proactive care (including costs) in order to make those decisions.
If it were up to me, every woman would be offered what is currently considered ‘high-risk’ care, but it would also be comprehensive and include multiple discussions with the families about any and all risk factors that are present and the options available to manage them. I hope our health providers would want to do this because it is utilizing the technology, intelligence, and ethics of 21st Century health care.
Not long ago, yet it seems like ages, we had the good fortune of meeting Mark & Christine Ommen although the circumstances were far from fortunate as they had just lost their precious Matthew to an umbilical cord ‘accident’. I say we had the good fortune because this is an amazing talented young couple who now share our passion at Star Legacy Foundation for preventing stillbirth. Christine began blogging as a therapeutic release but she has a true gift for putting on paper what so many of us have come to understand along our own journeys. Read this blog and then read the rest – they are simply amazing. You will no doubt subscribe to her blog as we have so you don’t miss anything. Little Matthew is impacting so many through the voice and pen his Mother provides.
Right after Matthew died, I left my bed only to meet visitors in our living room. One day, though, I just couldn’t. That day was especially dark, my “I want to die” feelings particularly intense. Mark warned ES I wouldn’t get up, gave her an easy out. But she visited anyway.
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I am often asked – How is Star Legacy Foundation different? I usually give a long-winded answer about our programs and amazing volunteers. Today, the answer that sums it up best is this: we believe we can do better.
When my son was stillborn 11 1/2 years ago, my doctor explained our loss to me with the words that ‘sometimes these things just happen’ and then she went on to say “the chances of this ever happening again are less than being struck by lightning twice in the same day.” I have talked to countless families since then who were given the same explanation or a variation of that concept. Maybe I’m stubborn, but I wasn’t willing to accept that as an answer. I am a nurse practitioner and live in the medical world and see amazing things happen every day. Some happen so often that we now take them for granted. We do surgery on babies while they are still in utero; we transplant major organs; we eliminate diseases that once caused epidemics; we cure cancers.
Why do we accept that healthy babies at a viable gestation with healthy mothers having healthy pregnancies can just die without any warning or notice?
I don’t blame my doctor for this explanation because I know it was the answer she was given at some point. During her training, this was the information provided to her. The lack of research and awareness perpetuates this lack of advancement.
I blame our culture for not asking more questions.
- We need to expect more research into this issue.
- We need to expect better care for our babies.
- We need to expect these children to be honored by trying to prevent others from the same outcome.
- We need to expect that families will have access to all the support and resources they need to navigate their grief journey in a healthy way.
- We need to expect that we can and will do better.
At Star Legacy Foundation, our focus is on research and education because that is what we need for our health professionals to know more about prevention and caring for families. We have high standards and expectations because we believe it is possible. Much of it is right in front of us, but we need to reframe what we value, how we view these babies, and how we can use our tools and resources.
Many other developed countries are seeing decreases in their stillbirth rates. It is possible. Some estimates indicate that the stillbirth rate could be cut in half by changing current protocols or utilization of resources. We don’t need a fancy, new, Nobel prize-winning, molecular break-through. In short – we need to value these babies and be willing to put energy into doing all we can for them. By cutting the stillbirth rate in half, there would be 13,000 more babies who go home from the hospital every year in the US. There would be 13,000 families who will enjoy the holidays this season through the eyes of a precious newborn child instead of struggling through the holidays with the heart-break of ‘what could have been’ or ‘almost was’. In five years, there will be 650 classrooms full of kindergartners who won’t be there without our efforts today.
It is possible.
Please join us in making it happen.
WE. CAN. DO. BETTER.
Our guest blog this month is provided by our good friend and esteemed colleague Dr. Jane Warland of Adelaide, Australia. We are grateful to Dr. Warland for all the work she is doing to prevent stillbirth. If you have a question for Dr. Warland you can submit it here.
As I midwife I have certainly seen many babies born with the cord around the neck who are born alive and well, apparently completely unaffected. I have also seen plenty of comments from women on facebook and other social media who are prepared to say “my baby was born with the cord around his neck and he was fine” implying, by making that statement, that because their baby was fine that that must mean that it is never a problem!
I have also seen the other side of the story. My daughter Emma was stillborn with the cord around her neck. Whilst I have never thought that this was the only reason for her death I think it probably contributed, as I will explain below. I have also served as a midwife on South Australia Perinatal sub committee. This committee looks at all stillbirths in South Australia and classifies the cause of death. Whilst serving on this committee I had the privilege of learning from the wonderful Dr Yee Khong (South Australia’s awesome perinatal pathologist) about signs that he sees in cords of stillborn babies that indicate to him that the cord played a part in the stillbirth. That said I also know from my service on this committee that cord round the neck is quite rarely attributed as the cause of death, even if it has played a big part; it is usually considered a contributory factor. This means that when people read perinatal statistics they don’t see “cord around the neck” as a cause of death and this can lead to the false assumption that cord round the neck never causes stillbirth.
So I think the short answer to “is the cord around the neck a problem or not?” is “it depends”.
Depends on what? Probably lots of things but here are the top 3…IMHO:
· The type of wrap
· The vulnerability of the unborn baby
· Other factors such as the position of the placenta, the length of the cord, the amount of whartons jelly and the “cord design” AND the position of the baby in the uterus.
Type of wrap:
Jason Collins has done a lot of work in this area and he describes two types of nuchal cord illustrated in the picture below:
Type A circles the neck but is able to slide, Type B locks on itself and can tighten. Times when it is especially likely that the tightening can occur are when the baby naturally drops into the pelvis ready for birth at around 36 weeks and also when the baby moves down into the pelvis during birth.
So if the baby has a type B cord then clearly this has the potential to be MUCH more problematic than a type A. Why? Well the type A is likely to slip past the body as the unborn baby moves around and/or descends during birth whereas the type B will tighten and may cause such distress that a c-section is warranted and can also cause the baby’s lifeline to become squeezed and blocked such that it can result in the unborn baby’s death. Can the person delivering the baby tell if the baby was a type one or type two cord? No BUT it can be clearly seen on ultrasound…if you are looking!
The baby who dies to stillbirth often has a combination of factors which together result in stillbirth. The tricky thing is that whilst we know some factors that make the baby vulnerable to stillbirth such as the baby who fails to grow, or the baby who fails to move as normal, there are many factors that we don’t know about yet that also make the unborn baby vulnerable. Looking at the circles we can see that if the baby is vulnerable AND he has a type 2 cord around his neck AND he has a posterior located placenta AND a long skinny cord AND mother who regularly sleeps on her back that all these factors combined may just be the straw for THAT baby.
My “triple risk model” helps give a visual for this:
There are many other factors that can come into play regarding whether or not the cord around the neck MIGHT be a problem for SOME babies. These include: the position of the placenta, the length of the cord, the amount of wharton’s jelly and the “cord design” as well as the position of the baby. Briefly if the cord is thick, normal length, nicely spiralled (without being excessively so), has three vessels and lots of wharton’s jelly then THAT baby is much more likely to be born alive and well even IF the cord is around the neck than if the cord is long, skinny, straight and with minimal wharton’s. For more about this have a look at Dr Collin’s book Silent Risk
So should a pregnant mother worry if it is seen on ultrasound that her unborn baby has the cord around its neck? No she shouldn’t worry BUT she should be aware that there may be other factors at play (such as I have listed above) that mean that this could end up being a problem for her unborn baby. So IF she knows that her baby has the cord around its neck (an oftentimes she doesn’t) then that’s the mother who should pay particularly attention to what other factors she can remove from the circles of the triple risk model to help keep her baby safe.
Welcome to October! In the US, it is National Pregnancy and Infant Loss Awareness month. And it is a bittersweet month for me.
It is amazing because we have an entire month to hold special events or wear PAIL ribbons and pins. We have a sense of community that isn’t always present. This year, many of us are turning our facebook profiles pink and blue to remember our babies and spread awareness. Thee are memorial services and waves of light. Here in Minnesota, we just had our annual Run/Walk with over 900 people coming together to share memories and create hope for the future.
I recently returned from two international conferences where we had the opportunity to discuss pregnancy loss/stillbirth issues. We have been asked for newspaper, radio, and TV interviews. There is so much good energy and positive action.
I am also frustrated and upset that we even need this awareness. I am saddened that so many families join this community every year and have a reason to be with us. It breaks my heart that many more families are grieving in silence.
Please take this month to remember all the babies gone too soon. But think about our community as well. Reach out to those who may not be able to reach out for themselves. Remember that we all grieve differently and have different needs. Look for opportunities to share your story so that the larger community will know about our efforts and other families will not feel alone. Celebrate the organizations, businesses, and individuals around you that are making a difference for families. Let the world know about their good work!
This is a month where it is easy to feel that our solitary efforts are minor. But every effort is significant. When all of our efforts are combined, we can do incredible things for this cause. We may not have the entire NFL wearing pink and blue (yes – I admit I am jealous of breast cancer awareness!) But we know that we are remembering our precious babies in our own ways. We are working to reduce heartache of tomorrow’s families. We know that this month is special because we get to say that our babies matter – every month.
If you are struggling with your grief or would like to talk to someone who has been on this path, please call our support line: 952-715-7731.
Star Legacy Foundation Kicks Off Pregnancy & Infant Loss Awareness Month With Annual Run/Walk Event!
October was designated as Pregnancy & Infant Loss Awareness month in October of 1988 by President Ronald Reagan. It’s an important time for us all to remember the babies, reflect on what has been accomplished and recommit to our vision that one day – pregnancy & infant loss will truly be a rare event. Star Legacy Foundation holds an annual event to kick off the month filled with awareness activities.
We are fast approaching our annual Let’s Not Be Still! Pregnancy & Infant Loss Awareness Walk/Run – Saturday, September 26, 2015.
It is already shaping up to be bigger than ever! You won’t want to miss out!
Why is this important?
We do this annual event each year for a number of reasons.
- Most importantly it is a time to bring our loss community together in ways that are not otherwise possible. There is comfort in being together in a community of other loss families, friends, advocates and supporters where everyone ‘gets it’ and there is no need to explain.
- It is an opportunity to spread awareness about the thousands of babies that are miscarried, stillborn, or only live a short time after birth. Through our extensive marketing efforts, we can keep these issues in the public.
- And we raise funds that help us continue our programs and projects dedicated to awareness, research, education, prevention & family support!
What’s happening at this event?
- It is a time to remember our babies memories but yet celebrate what their memory adds to our lives. Again this year, babies names will be added to the shirts as a permanent reminder of why we do what we do!
- We’re adding a new event specifically to remember the babies! The Eden Prairie Parks & Recreation Department has graciously allowed us to plant a memorial tree on the grounds at Staring Lake Park. We will be dedicating this beautiful white oak tree and placing a memorial stone at the base. All families are invited to come and paint a rock in their baby’s memory to place at the base of the tree for the memorial ceremony. Then – take your stone home with you at the end of the day!
- Abby Libsack Photography will be taking team photos prior to the start of the activities! Be sure to gather your team early and get your photo taken!!
- We’ll have fun! This event is designed for the serious runner, the not-so-serious runner, the walkers, kids and toddlers! There is something for everyone.
- Back by popular demand, we will have face painting stations available for the kids!
- New this year – a raffle! You can purchase tickets and drop them into the jars for the items you wish to try for! We have lots of donated items and the list continues to grow. Be sure to check the list often!
- The organizer of the top fund-raising team will receive 4 – one day Disney Park Hopper Passes – a $600 value! It’s not too late to create a team or support a team!! This year registration fees are applied to team totals!
- Susan-Elizabeth Littlefield of WCCO will be our Mistress of Ceremonies!
- The producers of Don’t Talk About The Baby will be joining us. For their upcoming documentary on pregnancy loss, they are asking to video families willing to share their stories. Schedule an interview with the producers here. (Run/Walk participants will have priority for interview times.) Interviews held in Eden Prairie, MN.
- The 11 Angels Project of the Star Legacy Foundation will be with us to share about their care companion program. This group is looking for new volunteers. Stop by to learn how you might be able to help other families.
- And certainly not least of all – several of the legislators that helped us pass legislation in Minnesota this past year will be joining us! Please be sure to take a moment to thank them and tell them how much their efforts mean to you!
What do you do with the funds raised?
Funds raised at this event go to the programs and projects of the Star Legacy Foundation. We have lots going on and your participation will help us in so many ways! Unlike so many other nonprofit organizations, we have very little overhead and every dime raised goes to supporting our programs and projects! This is VERY important to us and we are very proud of that fact! Ongoing projects include:
- Family support efforts through our 11 Angels care companion team
- Awareness activities – both local and nationwide though our media efforts and Champion events
- Expanded awareness through our presence and presentation at national and international meetings
- Patient education materials designed to help expectant couples monitor their baby before birth such as our See Me, Feel me program – which is now also available in Spanish!
- Educational events like the Stillbirth Summit
- Nationwide support line staffed by professional grief counselors
- Support groups for grieving families – specifically for bereaved parents; couples experiencing pregnancy after loss; and grandparents/extended family & friends
- Health care professional education & recognition projects
- Support for ongoing research and publication of study results
- Continuing efforts for analysis and sharing of results from our STARS Study.
- Development of new research studies
- Legislative efforts for a number of issues related to our objectives.
There are also a number of exciting new projects in development that you’ll be hearing about in the months to come – all made possible by the generosity of those who are passionate about saving babies.
What if I am unable to attend this year?
- Even if you can’t be there in person – you can participate virtually and we will mail you one of the event shirts!
- If getting a shirt isn’t important to you – your donations are gratefully appreciated.
- Check out our calendar to see if we are holding an event near you! Plan to join in!
- We work with families all over the country in planning their own events to support our programs and projects. If you would like to host such an event – let us know!
- Mark Feb 13, 2016 on your calendar and plan to attend a very special new event to honor our babies and recognize the perinatal loss heros and efforts that are truly making a difference. More details to be announced soon!