Archive for the ‘Stillbirth Research’ Category

Tough Questions

December 19, 2016 Leave a comment


by Lindsey J. Wimmer, RN, MSN, CPNP, CPC – Executive Director, Star Legacy Foundation


I am often asked some very difficult questions about the medical community’s efforts to prevent stillbirth and other poor pregnancy outcomes.

  • Why do I have to have 3 miscarriages before they will do any tests?
  • Why was my doctor willing to induce me at 40 weeks once he knew my baby had died – but he wasn’t willing to do it 3 days earlier when my baby was still alive?
  • Why did my doctor recommend tests that cost thousands of dollars after my daughter died, but didn’t want to order much less expensive tests to look for potential problems earlier?
  • When I asked my doctor about causes of stillbirth, he said drug use and obesity are the primary causes. It doesn’t make sense to me that they say stillbirth isn’t caused by something the mother did – but the causes they give us are the mother’s fault.
  • I received wonderful care in my rainbow pregnancy, but why did my son have to die before I could get this kind of care?
  • Who decides what tests are appropriate or worth the money?

In general, I don’t have very good answers for them.

Some questions can’t be answered without more information about the situation and the medical decision making process, but many are related to the policies and finances in health care. In most cases, the providers gave the answer or acted as they are taught and as they are expected given the standard of care set by their professional organizations and local institutions. That doesn’t make it easy to explain to a family that policies determine which conditions or babies are worth the additional cost and risk. It is especially challenging when policies may be in place because of or despite the lack of solid research into the issue. And, of course, hind sight makes every decision that weighs financial costs against the life of a specific child look horrible.
This is obviously a multi-faceted systemic and societal issue. As such, it will take the cooperation and concerted efforts of all of us to make changes we can be proud of. We need:

  • recognition that many of these deaths are preventable
  • better awareness of the statistics, risk factors, and the need for more research and education
  • expectant families to be informed and educated participants in their health care and any medical decision
  • medical researchers to continue and expand their work aimed at prevention options
  • health professionals to challenge practices based on “the way things have always been done”, seek out education and new research, and practice using their clinical judgement
  • health professionals with curiosity and desire to improve the rates of poor outcomes to at least the level of the countries with the lowest rates – but also to surpass them
  • community leaders and advocates who value and consider the perspective of families when creating policy and making decisions
  • additional resources dedicated for researching the prevention of poor pregnancy outcomes and their sequelae

Despite the huge challenge, I am optimistic! In the 12 years since my son was stillborn, I have seen significant improvements and advancements. There is a momentum that is exciting and worth encouraging.

We can all do something to make 2017 a year that started even more change toward prevention!

Actions to Reduce Stillbirth

September 18, 2016 Leave a comment

by Lindsey Wimmer, RN, MSN, PHN, CPNP, CPLC

Hola from South America!

I had the pleasure of spending this week in Montevideo, Uruguay at the Joint Conference of the International Stillbirth Alliance (ISA) and the International Society for the Study and Prevention of Perinatal and Infant Death (ISPID).  In addition to visiting a beautiful country with a rich history and friendly people, I was able to learn more about the progress toward stillbirth prevention and meet with some of the world’s most passionate stillbirth researchers!

I am extremely excited about some of the research being done.  Several presentations gave more detail about the studies in the recent Lancet Series on Stillbirth.  Others shared new and exciting findings.  Here are a few highlights of what I took away….

Maternal Sleep Position

There are now four studies that have shown that sleeping on your back can increase the risk of stillbirth.  It doesn’t appear this can cause problems by itself, but can be significant for babies that are at risk for other reasons first. mri-left-side-sleeping

A photo of a pregnant woman’s inferior vena cava while lying on her side, and then immediately after lying on her back shows obvious compression.  This can decrease the blood flow throughout her body and to her baby.  Nurses have understood this theory for decades and will turn a woman onto her side if the baby starts to show distress or if the mother become light headed.  It is worth noting that this woman didn’t experience any symptoms – so we can imagine how much compression might be present for those who are symptomatic.

Dr. Jane Warland presented data on use of a belt designed to keep pregnant women off their backs while they are sleeping.  It also indicated that the baby has less distress and the mom had better oxygenation on nights that mom wore the belt!

Researchers in New Zealand have seen a decrease in their overall stillbirth rate in the last few years since these studies were in the news.  Even without official medical recommendations, it appears women have started to sleep on their sides during pregnancy, and it appears to have prevented some stillbirths!  In any case, it hasn’t shown to be harmful at all.

All of the sleep researchers are cautiously optimistic about their findings, but I suspect that very soon there will be significant recommendations about encouraging pregnant women to sleep on their sides.  And you may see more devices available to help them do so all night.

Fetal Movement

Many studies are looking at fetal movement and how it may be a symptom we can use to detect a vulnerable baby.  Over the years, interest in this topic has been hot and cold, but there is new excitement.  In general, the researchers all recognize that fetal movement is definitely an indicator that women and their providers should monitor.  The research is trying to better identify how to measure it and how to respond when it changes.

All of the studies presented show that there is not a certain number of movements or ‘kicks’ that can determine if the baby is well or not.  Altered fetal movement is the concerning factor.  If a baby is moving significantly less, or more than usual, that should be reported and investigated.  Similarly, there can be differences in how the baby is moving.  For example, a baby who usually has smooth and calm movements but is suddenly showing strong, jerky, and sharp movements should be evaluated.

It also doesn’t matter how a mom monitors fetal movements.  Studies reported looking at kick charts, smart phone apps, or even just moms making a mental note.  They were all equally effective.  The important thing is that moms are cognizant of baby’s activity and report their findings to their health professional.

My favorite analogy on this topic came from Dr. Alex Heazell.  There is often a lot of concern that fetal movements aren’t a very specific ‘test’ of distress – and this is true. But Dr. Heazell pointed out that fetal movements aren’t a test, but a symptom.  Unfortunately, symptoms are not good indicators of disease in any aspect of medicine.  However, they still have value.  He used the example that only 5% of people with chest pain are actually having a heart attack.  Yet, we don’t hesitate to tell someone clutching their chest that they should be seen and evaluated immediately.  We must take fetal movement as a serious and imperfect symptom.



I was very proud of our entire organization and all of the families who participated in the STARS Study when Dr. Jane Warland and Dr. Alex Heazell presented some of the findings at this conference.  In addition to data about fetal movement that reinforced the other presentations, they talked about hiccups, time of death, increased fetal movements, and maternal intuition.  Each of these aspects of the STARS study was included because we need to know more information about them.  What the STARS study accomplished was to indicate these properties occur often enough to warrant future study.

einstein-quoteFor example, 83% of the women who experienced a stillbirth said they had a gut feeling at some point in their pregnancy that something was wrong or that the pregnancy wouldn’t end well.  In comparison, only 19% of the women who delivered a living baby had the same instinct.  Many women couldn’t explain the feeling, but knew they didn’t feel right.

Bereavement Care

We continue to learn more and more about providing proper bereavement care to families.  While listening to our South American colleagues, I was reminded that we have made some progress in the US.  One of the main priorities for advocates in Argentina is giving families the right to name their babies and see/hold their babies.  Many families around the world are still prevented from the memories and honors most Americans are allowed.

But, everyone has room for improvement.  Discussions about bereavement photography, culturally-competent care, care in subsequent pregnancies, and mental health resources remind us there is still much to do.

Investigation of stillbirth

I was intrigued by the many presentations looking at autopsy and audit after a stillbirth.  Fetal autopsy and placental pathology are considered the two most cost-effective tests to determine a cause of death.  Autopsy rates around the world for stillbirth remain very low which reduces the number of families who might learn a cause of death and decreases the information we can learn from many of these babies.

Reasons why families often don’t want an autopsy include the idea that the baby has suffered enough, they have too many unanswered questions, or they fear they won’t learn an answer anyway.  In the US, we also hear of families concerned about the costs associated with this testing.  Families who agree to autopsy are usually seeking as much information as possible, want to improve general medical knowledge, desire information to guide future pregnancies, or hope to find closure.

A study in Holland looked at if parents should be involved in the review/audit of perinatal deaths that is usually conducted by the medical personnel involved.  This study indicated that parents were interested in participating and felt it would help them trust that they had honest answers about what went well or not and that they would be a part of conversations deciding how the health professionals can learn from the situation to improve.

The PSANZ organization in New Zealand has created Project IMPROVE.  This is a training course for obstetricians and midwives to learn more about investigating stillbirth and neonatal death.  It is a well-done curriculum that reviews options for tests, how to ensure the best results from autopsy and pathology, how to communicate with families, how to conduct beneficial audits of the care, and how to evaluate and classify pathology findings.  Star Legacy Foundation is excited to be partnering with this organization, Dr. Bob Silver and Dr. Ruth Fretts to bring this curriculum to the United States!

Growth Restriction

Babies who are not growing properly are known to be at increased risk for stillbirth.  Dr. Heazell presented information about placenta growth factor and other biomarkers they are testing to better predict and identify babies who will/are not growing well.  The placental growth factor combined with ultrasound evaluation is looking very promising and is just one of the tests they are investigating to know more about placental health and preventing/treating placental insufficiency.


Dr. Vicky Flenady presented some challenges to the group in the final session.  Some key initiatives she presented:

  • Increased encouragement, support, and resources for women to stop smoking during pregnancy
  • Attention to risk assessment and surveillance for fetal growth restriction
  • Raise awareness and improve clinical management of decreased fetal movements
  • Dispel fatalism around stillbirth – only 7% of stillbirths are due to congenital malformations, so most stillbirths are NOT inevitable
  • Perceptions about stillbirth must be challenged and changed. Social attitudes contribute to stigma. (examples of these social attitudes include feeling most stillbirths are not preventable; that stillbirth is ‘nature’s way’; that parents should just forget the stillborn baby and have another child; or that parents should not continue to talk about their stillborn baby.)

Her final message is:

What will you do to ensure that babies who are stillborn are no longer left out or left behind???

I agree with her proposals and am motivated to do my part.  Throughout this week, I was able to talk to a number of individuals and I am very excited about how the projects of Star Legacy Foundation are going to fit in with these world-wide goals and initiatives.

First – Star Legacy will be hosting the 3rd Stillbirth Summit in Bloomington, MN June 21-23, 2017.  We hope you’ll join us to hear first-hand more research findings and participate in discussions about how to be part of the solutions!

Second – Star Legacy is working on some exciting research initiatives that will be launched in the next few months.  I am confident they will be extremely helpful to researchers and significantly move forward what we know about all forms of pregnancy loss.  Be watching our newsletter and website for more information and how you can help!

Third – we will continue our patient education programs focusing on knowing your risk factors, adopting a healthy lifestyle, monitoring baby’s activity, and empowering women.  We will also partner with health professionals to better assist families in making decisions about testing after a stillbirth.

Fourth – we are supporting researchers in the US and Australia who are looking at the stigma around stillbirth and a world-wide need for more respectful maternity care.

There is much more to come – but we can all be part of this momentum that is palpable and exciting!  Contact us if you would like to be part of what Star Legacy Foundation is doing!

The power of awareness…..

August 22, 2016 1 comment

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

I think almost every parent I know who has experienced pregnancy or infant loss has been told,

“Sometimes these things just happen.”

It is supposed to make us feel better because it isn’t our fault and nothing could have been done to prevent it. And to some people at certain points in their grief journey, it is comforting. However, to me right now – it is infuriating.

It gives me the feeling that there is no desire to improve or do anything about it. To a bereaved parent like me, it translates into – My baby isn’t worth the extra time, energy, resources, etc. That is insulting and false. Every baby is worth the effort to give them the best chance at a happy, healthy, productive life with a family that loves them more than words can describe.

I know that every health professional working in this area would love to eliminate these tragedies.  I believe completely that they do want to do something about it.

So why is this platitude used so often? 

Part of it is our societal discomfort with grief and a need to smooth everything over and make it all better. We hear platitudes all the time trying to minimize shocking situations because looking the horror in the face is often more than we are equipped to do.

The other part of it is that medical professionals have been trained that we can’t pursue theories or potential interventions until they have been proven many times over.  There is good reason for this approach and it has served the public well many times.

However, there is also a benefit to acknowledging our short-comings and having an honest dialog rather than repeating clichés and hoping it will make things better.

Here is the bottom line for stillbirth and related poor pregnancy outcomes:

  • We don’t currently have a magic bullet that will make it go away. We don’t even have the answer to ‘why’ this happened for the majority of families. We are far away from a simple, inexpensive solution wrapped in a pretty bow and served on a silver platter.

But that doesn’t mean we have to sit back and accept that “these things just happen.”

There are little things that we can ALL do.  And it starts with awareness and education.

Why?  Because information is power.

It doesn’t mean we have to have all the answers.  Even the discussion is beneficial.

We have heard from researchers conducting prospective studies that their stillbirth rates in the study group are significantly less than expected.  This means their stillbirth rate was less than the rest of the population that is not in the study.  It appears that knowing babies can die and that people are trying to figure out why/how to stop it – has some preventive effect!  That is a really simple and inexpensive method.  It isn’t 100% by any means and we may not understand how or why it works – but I’m happy with the improvement.

Norway, the Netherlands, and New Zealand have seen a reduction in their stillbirth rates by encouraging mothers to monitor their babies’ movements and discuss them with their health providers.

In Scotland, an effort led by SANDS was able to reduce their stillbirth rate by 18%.  In fact, their next report is expected to show a decrease by 20% in the last three years!   The three things they did for this result?

  1. Teach and encourage mothers to monitor their baby’s movement
  2. Screen for fetal growth restriction with more ultrasounds and growth charting
  3. Encourage pregnant women to come in immediately if they noticed a change in movement or have ANY concerns

If we could do something similar in the US, there could be nearly 5,000 fewer families planning funerals for their babies next year!

So how do we make this happen? 

For health professionals or anyone else working with expectant families, it’s a change in how we talk about it.

To my health professional colleagues, please have a challenging but honest conversation…….

“Everything looks good right now, but there are some things about your pregnancy that could be a problem for you or your baby.  Things like (advanced maternal age, obesity, too much/too little amniotic fluid, two-vessel umbilical cord, African-American or Native American heritage, gestational diabetes, or whatever the specific risk factors are) can increase the risk of your baby dying before birth.  We don’t understand why, but here is how we’re going to work together to reduce those risks as much as possible.  I would like to do a few tests at your visits to (watch the baby’s growth, the amniotic fluid levels, the baby’s response to stress or contractions, signs of infection, etc).  And, I need you to be our monitor whenever you’re not here in the office.  That means I want you to pay attention to this baby’s behavior and personality.  When is he/she usually active or not?  What types of movements or activity do you notice most or at certain times?  I’ll ask you about these things at each visit, but I also want you to call my office or go to the hospital if at any time you notice a change in your baby’s behavior; you have symptoms like bleeding, cramping, fever, unusual pain; or you are experiencing anything that has you concerned.  This includes your gut instincts.  Maternal intuition can begin now and I want you to tell me how you and your baby are doing.  Do you have any questions?”¹

This creates a partnership with the parents and has the potential to prevent poor outcomes!  It is respectful of the parents and helps them become well-informed participants in their care.  While it is obviously something an OB or midwife would say, we can all encourage these same parents to know their risk factors and be aware of any signs baby may be offering.

Ignoring perinatal loss doesn’t make it go away.  We need to attack it head-on to make a real difference.  I believe that parents partnering with health professionals in this way will have a dramatic effect on our stillbirth and other poor outcome rates.  I hope you’ll join us for this partnership!

¹ Star Legacy Foundation’s See Me, Feel Me patient education tool is a good resource for obstetrical providers when having these conversations.  Contact us at info@starlegacyfoundation for a free copy.



A father’s advocacy never ends.

June 7, 2016 3 comments

by Dale Fuller, Star Legacy Foundation Board Member

I hope Landon is proud of me today.

This year I’m celebrating Father’s Day with an empty highchair at our dinner table.  Two years ago we lost our son Landon to stillbirth at 38 weeks gestation, just a few days before his due date. 2015-06-18-1434648618-2834579-IMG_0719copy.jpg

I had grown up believing Father’s Day was about honoring your father, which I still do, but it’s taken a different meaning for me now, wanting to advocate for my children in a way I had never planned.

My story begins much like any other excited couple expecting a new baby.  My wife Carrie was 38 weeks pregnant with our second child.  We had already been blessed with a healthy daughter Elise two years prior.

Carrie’s pregnancy was “text book.”  Other than mildly high blood pressure everything was going perfect and in just a few days we would be expecting our son.  I still remember the morning of Thursday, May 15, 2014. I kissed Carrie goodbye on my way to work and put the baby’s car seat in my vehicle, eagerly awaiting his arrival.  I had waited to do this until his due date was closer, but I felt confident the time was right, just in case he came early.  Carrie was on her way to her last ultrasound appointment that morning.

My life changed forever that day.

During Carrie’s last, routine ultrasound the technician could not find the baby’s heartbeat. He was gone.  I rushed to the clinic to find Carrie leaning over a chair in a back room.  She was in shock.  I asked the doctor “how could this happen?”  The doctor shrugged her shoulders and said, “It happens.”  I was speechless.  I prayed Carrie would feel the baby move, and for this all be some horrible mistake.  Unfortunately that didn’t happen.  We were told to go home and come back the next day to deliver our baby.

One of the most exciting times in our lives had turned into a nightmare.2015-06-18-1434648739-4006315-IMG_0778copy.jpg

The next day we delivered our sleeping son Landon.  A perfect baby boy almost 8 lbs.  We were given 36 hours to make a lifetime of memories by taking photos, his hand-prints, locks of his hair, and introducing him to his big sister.

After a million “whys,” the doctor informed us that Landon had a “true knot” in his umbilical cord which had become too tight and caused him to pass away.  I immediately thought, “How could this have been missed after weekly ultrasounds for six weeks?”

The following week we buried our precious son. It was a bright sunny day with the flowers in bloom.  Surrounded by family and friends we said goodbye to the boy we all wanted to know.

After the funeral, Carrie and I started the quest for answers.  We sent her medical records to a well -known doctor who has dedicated his life to reducing stillbirth and studying the human umbilical cord (Dr. Jason Collins).  Shock struck again after finding that Landon’s cord knot was actually visible in some of Carrie’s ultra sound pictures. How could this have been overlooked?  We never got the answers we asked for, but have turned our passion for answers into advocacy.  This started a new journey in our lives.  It was time for me to advocate for my child.

2015-06-18-1434648813-3524894-IMG_2884.JPGShortly after Landon’s passing I joined the Star Legacy Foundation  whose mission it is to reduce the number of stillbirths and change society’s thinking about them.

Stillbirth is a public health crisis.  Every year in the United States approximately 26,000 children die from stillbirth, more than S.I.D.S. and childhood cancer combined, yet little to no funding or research goes towards this cause.  How can society be forgetting about these children who were so close to greeting their parents with a healthy cry? Unfortunately the medical community has been less than open to change, and interestingly comfortable with the number of stillbirths based on current data.  My son seems to be a “statistic” that is accepted by the medical community.

So we began contacting state health agencies and ACOG (American College of Obstetrics) asking them to use today’s technology more effectively to watch for warning signs of fetal distress and to identify ticking time bombs.  I’m not a doctor, but often wonder how they are able to perform such complex procedures like heart or microscopic surgery, but yet they say it’s not possible or necessary to detect a knot in an umbilical cord.  I’ve asked the medical community these questions.  One doctor told me that they “just don’t want to scare pregnant mothers.”  That is a poor response to a “stillbirth dad,” to which I’m now referred.

Additionally, there should be more awareness and education for expecting mothers about tracking fetal movements and what are the warning signs of fetal distress.  Reputable organizations across the nation such as The Star Legacy Foundation have material on how to do this.  Why were we not educated about this from our “trusted” medical provider?

We have already had success in this journey, however. In my home state of Minnesota, our lawmakers are listening and this last year passed into law a bill encouraging the Minnesota Department of Health to begin researching the causes of stillbirth and to start drafting recommendations to reduce these tragedies.   This year we were successful in convincing Minnesota lawmakers to provide a $2000 one-time tax credit for stillbirth families to offset the unexpected expenses when a baby is stillborn.  I am hopeful this is a movement for other states and for action at the federal level.

On this Father’s Day life has gotten easier.  A few months after losing Landon, my wife and I found out we were expecting another child.  How happy, but scared we were.  I prayed every night that history would not repeat itself.  Carrie and I began the search for a doctor who would advocate for us. After seven interviews (and some persuasion) we found one!  We had ultrasounds twice a week and looked at the umbilical cord in depth at every appointment.  In May 2015 we welcomed home a healthy son, Lukas. “Bittersweet” is the word I use to describe the experience.2015-06-18-1434648954-1719437-P7.jpg

Looking back over the past two years, Carrie still asks me “why did this happen to Landon?” and “what could we have done differently?”  The answer I give her is that we did the best we could with the information we knew at the time. As a father, I have to believe this.

I hope Landon is proud of me this Father’s Day.  It’s been two years now since I held him last, but I can still smell his baby smell, I can still feel the weight of his body in my arms, and can still picture his beautiful hands and toes. I will continue to remind my living children about who he was, and what took him from us.

I would ask all fathers across the country to take a moment to honor their children and to think about how they are advocating for them.  They need you more than you know, and the moments you get with them are limited.

Landon, as long as I still have a heartbeat, I’ll go on advocating for you and for the all the other babies lost to stillbirth.

I love you,


Sometimes These Things Just Happen

December 8, 2015 5 comments

by Lindsey J. Wimmer, RN, MSN, CPNP,. CPLC

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. Garrett2013 pregnancy & infant awareness loss banner

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. 



Is cord around the neck (nuchal cord) a problem or not?

November 10, 2015 1 comment

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:

Other factors:

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.

How Can I Make Sure This Never Happens Again??

August 24, 2015 Leave a comment


by Lindsey Wimmer, RN, MSN, CPNP, CPLC

The two most common questions I hear from stillbirth families are:
1. Why did this happen?
2. How can I make sure this never happens again?

For the second question – I have found great comfort in doing whatever I can to support stillbirth research. From a large, public health perspective, that is one of the things I can do to help ensure future families do not have to endure this  tragic journey. Selfishly, it also helps me to think that something good could come from sharing my own stillbirth experience.

I know many other families feel as I do. The proof has hit the medical literature this week as the first paper from the STARS Study. Click here to read the paper.  Drs. Jane Warland, Louise O’Brien, Alex Heazell, and Ed Mitchell have written an article that describes the importance of listening to pregnant mothers as well as the need for more research in emerging areas of interest. We are so grateful for their hard work, expertise, and friendship! These four researchers really are among the best and most dedicated in the world!

PThe Study of Trends and Associated Risks for Stillbirth (STARS) Study began in 2012 as an outcome of the Stillbirth Summit 2011. The majority of the researchers in attendance worked together to create the online survey that over 1700 women then answered! It is a wonderful example of researchers, health professionals, and families working together to address the many questions surrounding stillbirth.

In addition to this cohort of women who had a stillbirth more than 3 weeks before they completed the survey, another controlled cohort completed the study within the first 3 weeks of their losses.  We anticipate results from that portion of the work to be available soon as well.

Star Legacy Foundation would like to take this opportunity to thank the researchers who are so passionate and dedicated to this cause. We are fortunate to have brilliant minds focused on saving these babies. Most importantly, we want to say THANK YOU to all the women who shared their stories for this effort. It isn’t easy, but your courage is helping us learn more about stillbirth prevention and treatment.

For anyone who wasn’t able to participate in the STARS Study (or also for those who did!) – there are many other opportunities to contribute to research projects. Research studies that you might be eligible for are listed on our website under Research. Current options we know of include a sleep study, psychological aspects of stillbirth study, physical activity studies, and study of stillbirth mothers of color.

Plus – Star Legacy is continually working on more research efforts and will hopefully have some exciting announcements in the near future. Our hope is that everyone with the strength and courage to share their experience for stillbirth prevention has the opportunity to do so!

Thanks again for your support in these studies and in sharing the results!

Should We Be Scared?

July 14, 2015 2 comments

by Lindsey J. Wimmer, RN, MSN, CPNP, CPLC

“I don’t want to scare my patients.”

I hear this from obstetricians on a regular basis.  And, at first, it seems caring and comforting.  However, as I think about it more, it can be condescending, paternalistic, and unethical.

When we are scared, we are simply nervous or concerned about a possible poor outcome or event.  Pregnant women are always scared on some level about the health of their babies.  This is often seen as a good thing because it’s a motivator to make good choices and follow medical advice.  For example, we regularly and easily tell women that smoking, lack of prenatal care, certain diseases, specific medications, etc can harm their baby.  That information empowers women to make informed choices.

So why are providers hesitant to tell pregnant women that stillbirth can happen, that monitoring fetal movement is a way of monitoring the baby’s well-being, that they have a higher risk for stillbirth, that some concerns are identified on ultrasound, or that women who have had a poor pregnancy outcome have a higher risk of poor outcomes in future pregnancies?

I see two main differences.

First – it’s easier to make recommendations that only require the mother to change her behavior.  If it is a concern that will require a change in protocol, more office visits, additional tests, and possible interventions, it becomes challenging, time consuming, and more ambiguous in terms of expected progression and outcome.  These changes may also require a provider to advocate for the patient with hospitals, other health professionals, clinic staff or partners, and insurance companies.

Second – all these changes require the provider to navigate the rest of the pregnancy in a more stressful environment with fewer solid options to ensure a perfect outcome.  This is very scary – to the provider.  It is of course, scary to the families as well, but not any more so than concerns about folic acid and anatomical abnormalities.  We address those patient fears by providing education and resources.  The same should be done for providers – they aren’t scared when they have good, solid research and the support of major organizations.

The key in all of this is that we need more research into things that may ultimately help prevent many stillbirths or other poor outcomes.  I absolutely believe this and haven’t found anyone who disagrees.  There are certainly things we can do as families and advocates together WITH the medical community to bring awareness and funding to stillbirth research.  And we should do them.

The harder answer is how to approach these challenging situations until we have the solid evidence needed.  While we wait, 71 babies are stillborn in the United States every single day.  To those families, waiting patiently is not an option.

A common approach is for the providers not to inform their patients of these underlying issues.  They feel they are being compassionate by not making the patient worry about something ‘they can’t do anything about’.  And the statistics reinforce this decision.  For 159 of every 160 patients they see, this approach works great.  The mother is ignorant and blissful and both mom and baby have acceptable outcomes.  It’s beautiful.  Until the 1 in 160 walks into the office to learn her baby’s heart has stopped beating.  If you are that one parent, your life has been altered forever because you were hit by a train you didn’t even know was on the tracks.

For that family, playing the odds is not acceptable.

I am troubled by providers withholding information from patients or assuming they will get it elsewhere.  Even if it isn’t good news, there is an ethical obligation to inform your patients of all you know.  We may be scared to think about getting a colonoscopy, but our doctors recommended them, explain them to us, and help us create a plan based on what is learned.

I am also troubled by OBs and midwives feeling they can’t do anything about these issues.  They manage risk and challenging pregnancies every day.  In simple terms, they screen for problems, monitor issues that have been identified, and do all they can to support mom and baby physically until the baby is delivered or until the baby is determined to have a better chance at a full life if they are delivered rather than continue in a distressful pregnancy.  On a psycho-social level, this strategy also allows the family to process the situation, make decisions, gather support, and identify resources.  These acts can be invaluable during the pregnancy, but can also make a significant difference when the pregnancy is over – regardless of the outcome.  Applying this management concept to more risk factors or conditions has the potential to save many babies and assist thousands of families in their emotional health.  But it requires communication and full disclosure.

super heroI also want health professionals to understand that your patients don’t expect you to be super-human.  We may not like it, but we realize you may not be able to eliminate all risk or promise perfection.  Sometimes the best answer in medicine is “I don’t know.”  There is a level of appreciation when physicians explain to a family that they don’t have a magic wand or crystal ball.  At that point, all we need is all the information you have and the ability to work with you to create a plan that makes the most sense for us.  Knowing that our provider was honest with us, listened to our wishes and concerns, did all he/she could, and was on our side the entire time means so much to us regardless of the outcome.

More than ever, medicine must be a partnership between the providers and the patients.  To any providers reading this – let your patients be part of the team!  They have insider knowledge, they are heavily invested, and they can be your biggest ally.  On an individual level, this can lead to amazing relationships that benefit everyone (even if the outcome isn’t perfect).  On a bigger level, they can help encourage the research and resources you need to do even better for future patients.  Knowledge empowers.  Ignorance disempowers.

My hope is that obstetrics will start to address the fears of providers and let the patients help.  In the mean time – sharing information is the best way to empower us all.

Home Fetal Monitoring and One Devoted Grandfather

February 25, 2015 6 comments

This month we are honored to have a guest blog by someone who knew all too well the story about stillbirth – she has lived it her entire life as she watched her father push forward his passion for preventing these needless tragedies.  And then she had her own brush with tragedy……. read on….

Guest Blog by Catherine Alford

Jason Collins and babies

The Alford Twins – Nicknamed Bean and Beanette long before their birth, and their proud Grandpa Jason!

I’ve been hearing all of your stories – your stories of loss, love, sadness, and eventual triumph – my entire life. My dad, Dr. Jason Collins, started his research on umbilical cord accidents when I was only 5 years old. In fact, I was so used to him staying up late every night looking at heart rate strips that I used to draw him pictures of them and tape them to his bedroom wall so he’d see them before he went to bed. It was far more exciting than drawing him stick figures, and he thoroughly enjoyed them.

My dad has been trying to solve this problem, this terrible, preventable problem of umbilical cord accidents for such a long time. It has been his life’s work, his obsession, and his amazing gift to medicine. When I was a kid, we had a phone in our kitchen connected to the wall with a really long cord. This was back before cell phones of course. Every time other physicians would come over to the house, my dad would try to explain what happens to a baby in utero with a UCA using the phone cord. He would wrap that cord around his arm, twisting it and turning it, trying to explain. “Torsion!” “A true knot!” These moments, these lessons, slowly seeped their way into my mind. I knew at a young age that having a full term healthy baby was truly a miracle.

Needless to say, when I got pregnant for the first time, I was nervous. Very nervous. I was living abroad at the time away from my family and away from American healthcare. When my husband and I went in for an early ultrasound at 5 weeks to confirm the pregnancy, we got the shock of our lives and found out we were having twins. After the shock wore off and I had time to compose myself, the first person I told was of course, my dad.

“Dad,” I said, “You’re not going to believe this, but I’m having twins.” His immediate response was, “Oh cool! Twins are so fun to look at on ultrasound.”

My dad was there for me every step of my pregnancy. I obsessively e-mailed him pictures of every single ultrasound, even when my twins were just tiny little circles, even when he and I both knew there was nothing he could do to save them if something went wrong.

I wish I could say I enjoyed my pregnancy, but I couldn’t. Whether it was a blessing or a curse, I was fully aware of the risks. I knew about the unthinkable, the unfortunate reality that many of you have faced in your lives. To top it off, carrying two babies at once meant more risks, more chances for the kids running out of room, more opportunities for cord compression. I tried to stay calm and tried to enjoy it, but it was hard. Both my husband, who is a medical student, and I just wanted to make it to the end and hold our babies in our arms – alive.

cat and jason

Cat and her Dad peeking at the tiwns!

I moved back to the United States during my second trimester with plenty enough time for my dad to spoil me with steak dinners while my poor husband studied for a massively important medical school board exam. I received countess ultrasounds both from my regular physician, my maternal fetal medicine doctor, and my dad. I knew that if anything bad were to happen, I would know about it.

I know my dad though, and I know he was nervous about my pregnancy even though he tried not to show it. When I told him how happy I was to make it to the viability point of 24 weeks, he just calmly said, “Let’s just try to make it to 28.” When I told him I was having one boy and one girl, he let out the funniest laugh, which I got on video. He was slowly getting attached to the babies as a grandfather and yet remaining detached as a physician observing what could potentially be a problem.

At 30 weeks, my dad gave me a heart rate monitor so he could monitor the babies’ heart rates remotely, like he has for many of his Pregnancy Institute patients the past two decades. Every night, I would monitor my daughter for 30 minutes and my son for 30 minutes, sending my dad photos of the strips every five minutes. I had to put up with his commentary of course. When I had a contraction he’d say, “Yeah. That looked like a good one!”

At around 34 weeks, he started noticing a bit of cord compression on my daughter’s strip. He monitored me even closer, all while I was being seen by my regular physician every week. Throughout the day, I counted kicks, making sure I could feel both babies.

Then, the morning I hit 35 weeks, it happened.

I counted my daughter’s kicks but I couldn’t feel my son. I shot straight up in bed and yelled at my husband hysterically: “I can’t feel him!”

I went straight to the guest room to get attached to the heart rate monitor while my husband listened for his heart beat with his stethoscope. A wave of relief hit us when he found it. He was there. Alive. He just wasn’t moving.

I hopped in the bathtub since both babies got really active in the warm water. Again, my daughter kicked around happily but nothing from my son. After I ate a pop tart to try to wake him up and still nothing happened, I told my husband we were going to the hospital.

I didn’t wait for an okay from my doctor. I didn’t hesitate. I knew from hearing all of your stories that time was of the essence. I called my doctor to tell her I was on my way, then I called my dad. When I got there, I was contracting every 7 minutes and in labor. I hadn’t even noticed because I was so focused on trying to feel my son kick.

At the exact moment my doctor told me that I was going to be having the babies that day, my dad was texting me frantically ordering me to stay at the hospital (my husband sent him a picture of the heart rate strip, and he knew it was time!) I was able to calmly call him and say, “Yes, Dad, my doctor agrees! We’re having the babies now!”

On March 23, 2014 at 11:35 A.M. my son was born alive and healthy. A minute later, my daughter was born also alive and healthy. After a bit of a rough start and two weeks in the NICU, they came home with us. They’re now almost one, crawling all over the house and all over each other. They love to FaceTime with my Dad. They know his voice and try to clobber the phone when they see his face on it.

I know I’m fortunate because my story has a happy ending, and I’m confident that happy ending came because of my nightly remote FHR monitoring.

I also had the world’s best doctor and the world’s foremost expert on UCAs watching my every move during my pregnancy, and I’m especially blessed because that same doctor is my dad.


Catherine Alford  is the daughter of Drs. Jason & Candace Collins and is a well rounded professional in the digital space who is best known for her ability to write about difficult topics in an engaging way. With a formal background in American History, Catherine worked for years as an historian before she began to focus her attention on her love of blogging and building online businesses. Currently, she is a professional blogger for numerous websites and is actively growing her online reach.  Read her blog – Budget Blonde.  Her most important job however is Mom to her beautiful twin son and daughter.

A blog about blogs

January 10, 2015 10 comments

by Lindsey J. Wimmer, MSN, CPNP, CPLC 

I feel the need to speak up for stillbirth families in regard to the multitude of blogs, articles, and beliefs that circulate about us as grieving families and about pregnancy and childbirth in general.  The judgmental tone of much of this information makes it clear that these individuals have an agenda.  Because of this, I usually try to ignore them or give them the benefit of the doubt.  However, recently, I have read and heard several that are incredibly insulting due to the tone and ‘advice’ given to women such as myself.  I’m not sure when pregnancy and childbirth care became such a polarizing and political issue, but stillbirth families have a voice that needs to be heard, too.

To the authors (who shall remain unnamed – you know who you are): I can’t tell you how happy I am for you that your pregnancies and deliveries have gone as you hoped, expected, and prayed.  I am thrilled that you were not confronted with needing to make some of the most gut-wrenching decisions that we are ever asked to make as part of your childbirth experience.   I am genuinely happy that you have never experienced the pain of being told your child has died in your womb and that you will soon be giving birth to your dead child.  I don’t wish that on anyone and I have a special place in my heart for those who, like me, have lived that experience as part of our parenting story.  You cannot fathom what it is like to walk in our shoes.  This is not an insult.  I truly believe that it is impossible to have enough empathy for parents who have lost a child until we have lived it because it is a place so awful that our bodies, minds, and spirits will not let us go there until we have no choice.  I don’t expect you to understand where we are coming from.  I only ask you to respect that and don’t try to pretend you understand.

One thing I would like to try and explain is that when you minimize our loss or losses like ours, you minimize the love we have for our children.  It is condescending and offensive.  We are often referred to the wisdom, beauty, and perfectionism of God or Mother Nature or similar higher powers.  You are telling us that God believed that your child was worthy to live, but mine wasn’t.  You’re telling me that Mother Nature likes you more than she likes me.

Yes – I am now a statistic.  But I am a person.  It is less painful to look at us as statistics because there is safety and comfort in numbers. It allows you to keep us and our emotions at a distance.  Minimizing how often this happens or how it should impact our lives isn’t helpful.

I feel like you (and the countless others who write similar articles) have good intentions in trying to educate the masses and encourage women to have the type of experiences you were able to have or you have watched others have.  Unfortunately, we have learned the hard way that pregnancy and childbirth often do not proceed as we planned, hoped, dreamed, and prayed.  We USED to want the same things you want.  But sometimes we make decisions that allow us to follow our beliefs and hopes for the best outcomes as we define them.   Sometimes we must sacrifice one desired outcome for another.  These are choices we make every day as human beings.

I may be grieving, but I am not devoid of common sense or incapable of cognitive activity.  When you do not understand my comments or disagree with me, I am not “hysterical”, “crazy”, or “unstable”.  My experience has given me a different perspective.  That doesn’t make me wrong.  Don’t tell me my behavior is understandable.  I refuse to apologize for grieving my child the best I know how.

As part of this process, I will obtain the type of care I NEED for my physical and emotional health now and for future pregnancies.  If this is not the type of care you prefer or deem as necessary, that is fine with me.  I don’t expect you to know the anxiety in my head, the physical pain in my heart, or the constant fear I live with.  These things impact my well-being, too.  And I will advocate for myself and my child to minimize ANY threat to my health or that of my children.  Do not judge me for that.

And yes – I will tell everyone I love about stillbirth and about how they can reduce their risk.  I am not a grim reaper.  I am not dwelling in my grief.  I am simply telling my story and trying to protect those around me from the pain I know too well.

We are not looking for someone or something to blame.  We are simply trying to process this major life event.  In many cases, we are trying to learn how to prevent it from happening again.  People do the same thing with heart disease, cancer, mental illness, diabetes, and countless other conditions every day.  Should we also be offended at commercials encouraging us to get mammograms, quit smoking, get our cholesterol tested, etc?

We are searching for an explanation.  This is a natural part of the grieving process.  We don’t expect our providers to be super-human and we don’t expect an explanation to land our on our step with a neat bow on top.  But we would like more effort to learn what is happening to our otherwise healthy babies and how to prevent it.   Where would we be if our health professionals had thrown up their hands and said AIDS just happens and we can’t do anything about it?  It may not be possible to save every single baby.  We get that.  But more than 3 million babies every year around the world gives us a LOT of room for improvement.

A common suggestion is for us to trust Mother Nature.  We used to.  But, unfortunately, it failed us.  We wish we could trust that our bodies will do what is best.  But it is a struggle to ask our hearts to trust a process that that led to such heartache.  Why are we supposed to accept stillbirth as a natural process?  Cancer, heart disease, and every health condition I can think of is a “natural” process.  However, I appreciate that decades of resources have been focused on reducing the impact of these diseases. We do not blindly accept that cancer or heart disease happens without significant effort to prevent and treat them.

Until we have better answers, treatment, and prevention for stillbirth, I will support the stillbirth families and the health professionals working tirelessly to reduce the incidence of these tragedies.  These are individuals who recognize the value of our babies within our families and within our society. That gives me the most hope.  My hopes, dreams, and desires may look different than yours.  I’m ok with that.  I just ask you grant me the same courtesy.

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