Posts Tagged ‘umbilical cord torsion’

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.


Umbilical Cord FAQ

December 6, 2014 7 comments

By Lindsey Wimmer, MSN, CPNP, CPLC

Umbilical cord accidents continue to be the number one topic I hear about in emails and phone calls from pregnant or grieving families.  The reasons for this are many.  I do not claim to be an expert on umbilical cord issues, and the topic has been poorly researched.  However, I struggle with the ‘facts’ that are often used without telling the whole truth.  Here is my understanding of the most common questions or comments I hear regarding cord accidents.

The Whole Truth

us 1It is true that a significant number of babies are born with cords around their necks and the majority of them do not show any signs of distress.  This does NOT mean, however, that cords cannot cause problems!   To tell someone that cords can’t be problematic because they aren’t ALWAYS problematic is misleading.

Not EVERY person who smokes tobacco will die of lung cancer.  Does this mean smoking doesn’t cause lung cancer?  Of course not.  Does it mean we don’t need to tell people who smoke of the dangers?  Of course not.

If your baby was born with an umbilical cord issue and your baby is happy and healthy, PLEASE count your blessings and consider yourself fortunate to have landed on that side of the statistics.  We are not all so lucky.  Most of all, please don’t say my baby’s cause of death isn’t significant or worth worrying about just because it didn’t happen to your baby.

Should I worry about the ‘nuchal’ cord?

When we hear about cord issues, most people think about or are talking about nuchal cords.  This is when the umbilical cord is wrapped around the baby’s neck.  That placement alone is not necessarily the problem.  It is a problem if it is wrapped tightly.  However – not for the reason most people think.  A tightly wrapped nuchal cord is not a concern because of the baby’s neck (before birth, the baby does not get oxygen through the trachea into the lungs).  It is a concern because of the compression that is put on the cord itself.  The umbilical cord IS how the baby gets oxygen before birth.  So – a nuchal cord that is tight enough to restrict blood flow through the cord between the placenta and the baby puts the baby’s oxygen supply at risk.  However – the same is true for any position of the baby and umbilical cord that compresses the cord and reduces blood flow.  This can occur around a limb, around the baby’s body, as a knot in the umbilical cord, with multiple nuchal cords or wraps, as a poor insertion point into the placenta, between the baby’s body and mom’s, and so forth.  Nuchal cords get the most attention, but that is just one type of potential cord issue.

My doctor says cord accidents don’t cause problems and then my doctor said my baby was stillborn due to a cord accident.

I am the first to admit that the research into umbilical cord issues and how to manage them is lacking.  Much more is needed.  But the problem is compounded by the medical community not even being able to agree if this is a legitimate cause of death.  The part that is most frustrating to me is that many providers use both of the above statements when it fits the situation.

According to the Stillbirth Collaborative Research Network (SCRN) studies, 11% of all stillbirths were determined to be caused by umbilical cord issues.  By their own description, this is probably a low number because they had very strict conditions for coming to this conclusion and required definitive pathologic evidence of such.

It can be extremely distressful and frustrating to parents to hear during the pregnancy that umbilical cords don’t cause problems and then after the pregnancy that the cause of their baby’s death was an umbilical cord accident.  We can’t have it both ways.   This gives the appearance that providers either don’t know about the issue or they are taking the “easy” way out.  (Meaning it’s easier to reassure parents and play the odds during the pregnancy.)  It’s also easier after a stillbirth to provide an “answer” that is easy for families to understand and accept.  The belief that “nothing can be done about umbilical cord issues” doesn’t help because it allows providers to use the line that “these things just happen”.

If cord accidents DO happen, then why are we told they don’t?   If they DON’T happen, then why are we told they do?

Why should I say anything about a cord issue?

Many families find out accidentally or after the fact that their baby had an umbilical cord issue.  Most providers I talk to tell me that they will not tell families about the issue.  If they do tell them or the family finds out, the provider will minimize their level of concern.  Why?

Most providers say they ‘reassure’ their patients that cords don’t cause problems because they don’t want the mothers to worry and they can’t do anything about it anyway.

First – your job is not to keep me thinking that everything in pregnancy is bubblegum and unicorns.  Your job is to assess me and my baby and provide your professional recommendations about how to protect us both from harm.

Second – why aren’t you the ones asking for studies to be done that would help you have treatment options??  Our medical community should be leading the charge in demanding we learn more.  The advancements we have made in the last few decades in almost every area of medicine are incredible.  Why isn’t stillbirth (and cord accidents in particular) one of them?  The lacks of research and treatment options directly affect you, your patients, and how you practice.

Third – If you don’t know what to do about a condition or don’t feel like there are good options, tell us that!  We have the right to know what is going on with our bodies and our babies.  Let us be a part of that conversation.  Other areas of medicine don’t get away with this.


Cords don’t get tight with labor or cause the baby to be in distress

Umbilical cords can become taught during labor depending on many forces including the length and position of the umbilical cord and the position of the baby.  All the ways a cord can be compressed or compromised during the pregnancy can happen during delivery as well.  Any change in physiologic status can cause fetal distress – including hypoxia secondary to cord compression.  Not every baby who experiences distress during labor has a cord issue, but many do.  There are other causes of distress as well, but that does not mean cords aren’t one of them.

I personally had the experience of watching my baby demonstrate this effect.  While on a fetal heart monitor and having an ultrasound completed, we were able to see my baby’s position compress the umbilical cord.  Within about 8-10 seconds, my baby’s heart rate started to decelerate.  When she moved and the cord compression was relieved, her heart rate returned to normal.  Once her heart rate began to decelerate and she was not able to relieve the compression enough for her to recover, she was immediately delivered.  Because of this experience, I believe 100% that cord compression can be a cause of fetal distress.

Cesarean section is the only cure for a nuchal cord.

A newer question I have been asked is if a C-section is required to save a baby when a nuchal cord is identified.  I’m going to discuss this in terms of all cord issues (not just nuchal for the reasons mentioned above).   A C-section does not necessarily prevent cord issues, and it is certainly not the only way to reduce or manage cord complications.  There are situations where a provider feels this gives the mom and baby the best chance of positive outcomes. I am in support of any decision made with the family for those reasons.   I also believe vaginal deliveries are possible when cord issues are present.  In this case, knowledge about the issue, close fetal monitoring, and access to emergency care can help provide reassurance and warning about emerging symptoms.

There are many, many complex factors that must be evaluated when making the decision to have any surgical procedure.  I am not a fan of surgery whenever possible, but I also firmly believe that surgery is not the worst thing that can happen to someone.  This is simply another treatment modality that can be evaluated and considered.  Sometimes we must choose the lesser of evils.

Umbilical cord accidents don’t happen very often.

This is a statement made only by one who has never been affected.

And I would like to know what your definition is of the word “often”.

Stillbirth in general occurs 26,000 times every year in the United States.  If we use the SCRN numbers of 11% of stillbirths being caused by umbilical cord accidents, that would indicate that 2,860 babies will be stillborn this year due to umbilical cord accidents.  That is more than the number of SIDS deaths per year.  That is significant.

And these are the prenatal deaths.  What about the babies with umbilical cord accidents that only survive minutes or days?   What about the babies who develop cerebral palsy or other conditions as a result of the hypoxia suffered during an umbilical cord accident?

Which leads me back to where we began – we need more research to understand, manage, and prevent this cause of poor pregnancy outcomes.

Click here for previous related posts.

The Problem with Umbilical Cords…

March 11, 2014 10 comments

By Lindsey Wimmer, MSN, CPNP

Going through my email today, I had three notes from three different parents sharing their stories of umbilical cord

The first was a father wanting advice for helping his wife after she had recently delivered their stillborn child at 41 weeks.  The cause was determined to be a cord accident.

The second was a woman asking for prayers for a friend’s newborn child. During delivery, the umbilical cord was compressed and the child suffered hypoxia (lack of oxygen).  The baby is currently in the NICU undergoing body cooling in an attempt to reduce the swelling in his brain.

The third was a woman who recently delivered a baby in Japan.  Ultrasounds were a routine part of every prenatal visit during the third trimester.  At the 36 week visit, they noticed the baby had several umbilical cord wraps around the neck and arm.  Her OB showed her the concern, they did some extra tests to identify if the baby was in any distress, and then a cesarean section was scheduled at 38 weeks of gestation to avoid the baby having complications from the umbilical cord issues during a vaginal delivery.  She said it hadn’t occurred to her that her pregnancy might have been managed differently in the US.

A few major problems stand out to me with these stories.

bean scratching head

Families are told every day that umbilical cord issues don’t cause problems.  Yet, this is also the most common answer families are given when they ask why their child was stillborn.  This hypocritical approach is not acceptable.  If cord issues truly cause birth injuries and death, then that needs to be recognized, accepted, communicated, and addressed.  If they don’t, we need to stop attributing such a large number of poor outcomes to this cause.  It is true that many babies are born healthy despite umbilical cord issues, but this is not the same as saying the cord issues aren’t a cause for concern.

please don't say you cantProviders will often say cord problems are not concerning, but what they actually mean is that they don’t think they should alter the plan or don’t know what to do differently – so they simply offer false reassurance.  In the event of a poor outcome, a cord issue might really be the cause, but “cord accident” may also be the easy answer because it is accepted as something that “nothing” could be done about.

The woman from Japan proves that cord issues can be addressed.  It is impossible for us to guess if she would have had a poor outcome if they had chosen a different approach, but she and her providers chose not to gamble with her child’s health/life and took a route that they believed offered the least amount of risk.  This does not seem that radical to me.  I had similar thoughts and questions during my subsequent pregnancies.  My children all experienced different types of complications that were only identified because I was considered ‘high-risk’ (and that was only because of my previous stillbirth).  Each of these complications were managed and monitored closely.  They were delivered when the risks and benefits of their issues and prematurity flipped so that they had a greater likelihood of survival outside my womb than in it.  And they are all 3 happy, healthy beautiful children today.  Again – no way to know what the outcome would have been otherwise.  I’m eternally grateful for their health, I’m scared when I think about what other outcomes were possible, and I can’t help but wonder if their oldest brother would have survived if he had received the same level of care.

Likewise, we have no way of knowing if recognition of the cord issue could have prevented the stillbirth of the child in the first email.  But these are what-ifs that this family (and many of us) will live with for the rest of their lives.  The providers may be left with the same questions, How many babies MIGHT we be able to save or improve the outcome for if we identify potential problems before the mom or baby is symptomatic?Dr. Seuss don't give up

In the email from Japan, the cord issue was identified because she had a level of care that is not routine in the US and the provider was willing/able to offer a management plan that is not readily accepted in the US.  Americans have insurance companies wanting to reduce the number of tests and procedures, lawyers wanting to eliminate provider liability, and special interest groups pushing their agendas into the medical decision making process of families, providers, and hospitals. The baby in the NICU is a perfect example that everyone involved might have benefitted from knowing in advance about a potential cord issue and management beyond watching and waiting.  The stress, costs, and potential long-term effects for this child/family make some extra tests and a possible c-section seem pretty minor. The family who experienced a stillbirth didn’t know what cord issues could do or that they might be preventable until after their child had died.   The family in Japan was shown the potential issue and allowed to have a discussion with the provider about any risks and benefits of various options.  Together, they developed a plan that they felt comfortable would reduce the risk as much as possible.  Again, this seems rather simple to me.

I routinely hear stories of heath care professionals opting not to look for or to tell families (if they did look) about potential umbilical cord issues.  Their rationale is this – “Why scare the family when I can’t do anything about it?”  This is unbelievable. The family has a right to know regardless of the options.  Most people are understanding and realistic about what medicine is able to provide.  This would not be the first time that families are given information about a diagnosis that doesn’t have easy options.

But the next, obvious question is – why can’t we do anything?

I understand that we may not be able to unwrap a nuchal cord or undo a knot in the cord.  But we can manage the pregnancy differently from that point forward.  We do it every day with many other issues.  Why not this one?  When we see sensational stories on the news about significant anatomical abnormalities that are corrected in utero, it seems unreal that we throw our hands up when it comes to issues like cord and placenta issues.

Medicine is not black and white. 

What works for one person may not be the best solution for another. 

  • frustrated beanI am frustrated by recommendations and policies that assume all situations to be identical.
  • I am frustrated by providers choosing to keep their heads buried in the sand instead of looking for warning signs or risk factors because it makes their job easier or reduces their liability or because the odds are in their favor.
  • I am frustrated by health care professionals not involving families in health care decisions after an honest discussion of all information available.
  • I am frustrated by insurance companies or other parties influencing medical decision making more than the physicians and the families directly impacted.
  • I am frustrated by providers, organizations, and policies that ignore the fact that obstetrics is monitoring the health of TWO patients.

To me – these are some of the real problems with umbilical cords…and too many other causes of miscarriage, stillbirth, birth injury, and neonatal death.

We need more providers who are willing to do what makes sense

for their patients with their patients. 

We need more families to communicate their desires. 

We need more awareness of these issues so that every baby, mom, and family

get the absolute best that medicine can provide.

“What’s the truth about cord accidents?”

April 5, 2013 28 comments

by Lindsey Wimmer, MSN, CPNP

ribbon with footprintsI 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.

cord-around-neck-1aThere 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!

stars_3-1-12v2-compressedHelp 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:

We can be part of the solution! 

The STARS Study is underway!

September 22, 2012 1 comment

By Lindsey Wimmer, MSN, CPNP

The STARS Study is underway!! We at the Star Legacy Foundation are incredibly excited to share this news with you!

One year ago at the Stillbirth Summit, a group of researchers, organizations, and stillbirth families began discussions about designing a research study. This group worked diligently over the last several months to create an online survey for this purpose. STARS (Study of Trends and Associated Risks for Stillbirth) was born and it is now open!

We have had great responses, a lot of interest, and also several questions. In case you have the same thoughts, here are the top 10 Frequently Asked Questions about the STARS Study.

1. What is the purpose of this study? – This study was designed to replicate portions of the Auckland Stillbirth Study to learn more about its findings. The other researchers at the Stillbirth Summit and stillbirth organizations provided input for additional questions to learn as much as we can.

2. What will be done with the data collected? – The researchers involved will use the information relative to their individual work. Their teams will analyze the information to determine if any conclusions can be made. If so, it may support their current/other research studies or it may spark a new concept for researchers to evaluate.

3. Who are the researchers? – The STARS Study team members are:

*  Jane Warland, RN, RM, PhD, University of South Australia; Adelaide, South Australia

*  Louise O’Brien, PhD, MS; University of Michigan; Ann Arbor, MI

* Jason Collins, MD, MCR; Pregnancy Institute; New Roads, LA

* Alex E P Heazell, MBChB, PhD; University of Manchester; Manchester, UK

* Jennifer L Huberty, PhD; University of Nebraska Medical Center; Omaha, NE

* Jamie A McGregor, MD, CM; University of Southern California; Los Angeles, CA

* Edwin A Mitchell, MBBS, FRSNZ, FRACP, DSc; University of Auckland; Auckland, New Zealand

* Mana Parast, MD, PhD; University of California San Diego; San Diego, CA

* Tomasina Stacey, RM, PhD; University of Auckland; Auckland, New Zealand

* Lindsey J Wimmer, MSN, CPNP; St. Catherine University; St. Paul, MN

The STARS Study Coordinators are:

* Shauna Libsack, Star Legacy Foundation

*  Sherokee Ilse, Babies Remembered

* Marti Perhach, Group B Strep International

* Candy McVicar, Missing GRACE Foundation

4. Is this study IRB approved? – This study was reviewed by the IRB at the University of Michigan and determined to be exempt. All IRB regulations regarding exempt studies have been met. IRB #HUM63655  If you’re wondering what an IRB is – an Institutional Review Board is a required function at any organization that conducts research with people.  The primary responsibility of the IRB is to be sure that research involving people is conducted with full informed disclosure and consent and is conducted ethically.

5. Who can participate? – We need women from the following three groups to complete the survey:

*  Women who are currently at least 28 weeks pregnant or who have given birth to a live-born baby in the last 3 weeks

* Women who have had a stillbirth after 28 weeks gestation in the last 3 weeks

* Women who have ever had a stillbirth after 28 weeks of gestation

Click here to participate in the study!

6. I live outside the US or did when my child was born. Can I participate? – Absolutely! This is an international survey. The more women who participate from around the world and around the US, the better our results will be.

7. Why are only stillbirths after 28 weeks being considered? – The study was designed to replicate portions of the Auckland Stillbirth Study. In this study, they evaluated late stillbirths (after 28 weeks). To make our results relevant to their findings, we needed to have similar criteria. In addition, this is an international study and there is not a clear definition between various countries about what gestation is considered a stillbirth. It does not change the importance of what can be learned from all types of pregnancy loss, but research rules require strict boundaries on some items.  Please know – that all babies are important to us and we have visions of additional research that would include earlier pregnancy & infant loss.

8. What about me? My stillbirth occurred before 28 weeks? – We appreciate your interest and willingness to help! We recognize the significance of earlier pregnancy losses and intend to have additional studies in the future that will be focused on those babies. I hope you’ll be willing to participate when we have more projects available!

9. How can I help?The best way to help with this study is to participate if you qualify, and to share the information with anyone else you know who may be interested, willing, and able to participate. The more women who complete the survey, the more we will learn. The faster we are able to get women to complete the survey, the sooner we will have information to share!

10. How can I learn about the findings? – The researchers will be writing papers regarding their analyses. We will definitely share any and all official findings on our website and on our facebook page. If you would like to receive an email when these findings are published, send an email to:

If you have other questions regarding this study, please contact me at .

THANK YOU for your help and support!

Copyright 2012 © Star Legacy Foundation

Thinking outside the box……

September 5, 2012 1 comment

Last October, Star Legacy Foundation hosted the Stillbirth Summit 2011.  After thinking about this type of an event for a while, we decided to pull the trigger and make it happen!

There are so many fantastic people working on stillbirth prevention around the world.  Looking through some of those efforts, we discovered some similarities and overlapping concepts that were very exciting.  Our minds wandered to ‘what if’ we could get these brilliant minds in the same room to share their findings.  The biggest winner of that type of event would be the babies!

The focus was on stillbirth topics that are emerging ideas and ‘outside the box’ thinkers.  We needed people who are open-minded and looking at all aspects of this considerable problem.  We got just that – and so much more!!  Fortunately, we had a great response from these researchers who were all very willing to participate.

The topics included infection, hypotension, thrombophilias, sleep, placenta, cord, and fetal movement.  Researchers included Dr. Harvey Kliman, Dr. Uma Reddy, Dr. Mana Parast, Dr. Moraji Peesay, Dr. Louise O’Brien, Dr. Jane Warland, Dr. Alex Heazell, Dr. Ed Mitchell, Dr. Tomasina Stacey, Dr. James McGregor, and Dr. Jason Collins.  The discussion was lively and very educational.  Even better, at the end of the presentations, everyone worked together to discuss ways to work together and identify new projects needed.

One of the outcomes discussed was the publication of the presentations from the Summit.  Dr. Mitchell and Dr. Heazell took a leadership role and each researcher wrote a summary of their presentation.  The combination of these efforts was a summary of the Proceedings of the Stillbirth Summit 2011.  We are thrilled to announce that this article was just published!

It is so important to have these topics and this information in the medical literature to help the cause of stillbirth prevention.  Please take a moment to read the article, share it with your friends, and share it with your health care providers.  Every little bit learned is one step closer to being able to prevent many, many stillbirths.

I am extremely grateful for the researchers who participated so eagerly and the many, many volunteers who helped make this event a reality.  We are looking forward to the next Stillbirth Summit – in 2014!  But for now, we take a moment to savor this accomplishment and say thank you to the researchers for sharing their findings with the world.

Click here to read the Proceedings of the Stillbirth Summit 2011

as published in


About the author:

Lindsey Wimmer, a Pediatric Nurse Practitioner, is Mom to four children; Garrett, stillborn in 2004, Grant, Bennett and Austyn. Lindsey is an adjunct instructor of pediatrics at the St. Catherine University in St. Paul, MN and also teaches pediatric and obstetrical nursing  at Hennepin Technical College in Eden Prairie, MN.   Lindsey and her husband Trent founded the Star Legacy Foundation shortly after Garrett’s birth when realizing that the numbers of stillbirths in the US were staggering and that very little was being done to determine the causes or find prevention initiatives. Visit the Star Legacy Foundation to learn more.

A picture is worth a thousand words…and possibly your baby’s life too.

April 25, 2012 8 comments

by Lindsey Wimmer, MSN, CPNP

I LOVE pictures of my kids.  I mark the major milestone dates with pictures, I try to get pictures of the little faces I don’t want to forget, and I send pictures to family members assuming they want them as much as I do!  Those pictures tell us so much about them.  We can see their personalities, we watch them grow, we remember specific accidents or events, we evaluate genetics by figuring out who they look like, and so much more.  There are probably MANY reasons for this obsession (another blog topic in itself!) – but the bottom line is that I LOVE every picture I have of my kids.

That includes the ultrasound pictures I have of our son Garrett who was stillborn at 38 weeks.  Sadly, the last pictures I have of him while his heart was beating are from the 20 week ultrasound.  That is the only time in any of my kids lives that I have gone almost 5 months without taking their picture.  Yet that is the standard of care during pregnancy.  It seems crazy to me that we know so much is changing inside the uterus the last half of the pregnancy, yet we don’t utilize modern technology to watch and make sure mom and baby are healthy and growing as they should.

I believe at least one third-trimester (32 weeks to delivery) ultrasound should be a new standard for prenatal care. Some physicians and midwives have started this, but most have not.

First, ultrasound has been proven to be safe and is non-invasive.  There is essentially no physical risk to the mom or the baby.  What can we learn from a third trimester ultrasound?

1. How baby is growing and estimate current size

2. How much amniotic fluid is present

3. Where the placenta is, how large it is, and how mature it is

4. Where the umbilical cord is, how long it is, how twisted it is, if there are loops or knots in the cord

5. How the umbilical cord is inserted into the placenta

6. Blood flow through the placenta and umbilical cord to the baby

7. Signs of inflammation

8. Position of baby

Obstetricians know the end of pregnancy is critical – that’s why they start increasing the frequency of prenatal visits.  Yet, most of these visits include very little exam of the baby.  They will listen to the baby’s heartbeat and measure mom’s belly.  The heart beating for 15 seconds is hardly an accurate determinant of health.  Measuring mom’s belly with a tape measure does very little to tell us about what’s going on inside the uterus.  That measurement can be affected by the size of the baby, the size of the mother, the position of the baby, the amount of amniotic fluid, and the size of the placenta.  Once a baby is born, the pediatricians begin seeing that child on a regular basis.  First at birth, then at 4-5 days, then at 2 weeks, 2 months, 4 months, 6 months, 9 months, 12 months, 15 months, 18 months, and 24 months.  Not until a child is 2 years old does their growth and development slow down  enough that physicians feel comfortable letting them go more than 3 months between examinations.  We shouldn’t let a baby grow and develop that much before birth without watching more closely.

The major concern I hear is the cost.  I understand that this would add to the cost of prenatal care, but I believe the potential benefit is greater.  In most health care facilities, this ultrasound would cost the patient between $100 and $300 if their insurance did not cover it at all.  To some this is not a problem, and to others it is.  But I believe that physicians should offer it and let the patients decide if this is a cost they can incur.  We recommend vaccines, mammograms, blood tests, medicines, and more even though we know many patients won’t be able to afford them.  We leave the final decision to the patient.

 The other argument from health care professionals is that they can’t do anything about the umbilical cord or the other factors they could see.  But I disagree.  Pregnancies that have been deemed “high-risk” have these extras tests on a regular basis to monitor the situation.  The United States is actually very good at reducing prenatal and infant deaths among this population.  It’s the “low-risk” pregnancies that have a higher death rate.  Why??  Because the qualifications for high-risk are mostly characteristics of the mother.  Many high-risk babies are in danger because they have a low-risk mother.  The only way to find a high-risk baby is to LOOK at the baby with a third trimester ultrasound.  If a concern is found, the pregnancy can then utilize high-risk pregnancy protocols and be monitored more aggressively. 

If you are pregnant, ask your health care provider about a third trimester ultrasound.  Anytime you are concerned about the health of your baby, particularly any fluid leaking, weight loss, excessive weight gain, change in baby’s movements or behavior, pain, bleeding, fever, or past your due date – ask for an ultrasound and non-stress test for a full evaluation of your baby.  If you have concerns or symptoms, most insurance companies will cover the cost of these additional tests.  Don’t let cost be a roadblock if you or your baby are experiencing  concerning symptoms. Those extra pictures of your baby are not only precious keepsakes, but they might help save your baby’s life.  That’s a powerful picture.

P.S. We are taking an informal, unscientific survey of moms to see how often women are having a third trimester ultrasound.  If you have had a baby (alive or stillborn),  click here to take our survey.


About the author:

Lindsey Wimmer, a Pediatric Nurse Practitioner, is Mom to four children; Garrett who was stillborn in 2004, Grant, Bennett and Austyn. Lindsey and her husband Trent founded the Star Legacy Foundation shortly after Garrett’s birth when realizing that the numbers of stillbirths in the US were staggering and that very little was being done to determine the causes or find prevention initiatives. Visit the Star Legacy Foundation to learn more.

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