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Tough Questions

December 19, 2016 Leave a comment

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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!

Evidence-based practice versus patient-centered care

November 17, 2016 Leave a comment

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

Evidence-based medicine and patient-centered care are two very popular buzz words in health care, but they often don’t make sense to the general public and can be conflicting principles.  I attended a lecture last week by Dr. Sixto F. Guiang on this very topic at the annual meeting of the Minnesota Perinatal Organization.  He did a wonderful job of explaining to the audience how and why evidence-based medicine is used.  But, I also appreciated his acknowledgement that it is critical that common sense also comes into play. 

Most physicians are very scientific, analytical people.  They like concepts to be proven in black and white and have a clear explanation.  I admit that I am one of these people!  Unfortunately, life doesn’t always follow the rules – especially in medicine. 
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The concept of evidence-based medicine is that decisions made and interventions employed should be proven to be beneficial without undue harm.  It also considers the frequency of false-positive or false-negative results, emotional distress on the patient, and cost-benefit ratio.  To make these decisions, we utilize research studies that come in varying degrees of rigor and quality.  By definition, research is not perfect, but it is often the best we can do without placing humans at unreasonable risk or breaking rules of ethics.  We utilize statistical applications of power, statistical significance, confidence intervals, odds ratios, and more.  After years of work and analysis on many studies, health care leaders do their best to interpret the findings and make suggestions that are used by health professionals. 

Protocols and guidelines developed from this work helps providers make decisions, offer recommendations to families, and be confident in their practice.  It serves to keep providers from being swayed by a single study or ancedotal stories.  It helps insurance companies know what treatments are reasonable and cost-effective in an effort to reduce costs related to unnecessary or unproven methods.

The drawback is that research isn’t perfect. 

There are often outliers that don’t seem significant – until YOU are the outlier. 

 

That’s when the reality hits that we are working with people who have families that love them and lifetimes of potential.  This is where the principle of patient-centered care enters the picture. 

Health professionals may be the ones with years of study and experience, but the patients are the individuals who must live with the effects of decisions.  This is why we also consider clinical significance – what type of an impact the decisions have on the patient and family regardless of if the studies show it to be statistically significant or not.  Patient-centered care requires providers to respect individual beliefs, desires, needs, and values. It is the idea that the patient can determine if recommended care is appropriate for them.  Families today are more educated, more empowered, and have more resources than ever before when making medical decisions.  When the science directs us to a protocol or decision that is desired by the patient, the system works beautifully.  But, what do we do when the science and the patient’s wishes differ?

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There are many examples of this throughout medicine, including in obstetrics.  The 39-week rule, bed rest, stripping membranes, pain control during labor, prenatal testing and monitoring, pregnancy after loss care, and more are issues where the patient and provider may or may not agree, and the science may or may not support either side. 

This is the true ‘art’ of medicine.  Depending on the situation or your personality, this gray zone can be frustrating or empowering.  As with any skill, there are some providers who excel at this aspect and some who struggle.  There are also patients who appreciate or are challenged by the lack of easy answers.

It may appear that these two guiding principles of health care work against each other.  But, they don’t have to. 

I urge every health professional to use evidence-based medicine as a tool for patient-centered care.    It is not the one and only answer, but it helps us make decisions WITH our patients.  Each decision should be a dialogue between the patient/family and the health professionals.  The medical evidence is part of what the providers bring to this conversation.  So is their experience.  The families bring to the table their own values, experiences, cost-benefit ratios, and needs.  The patient-provider relationship is a partnership with equal amounts of respect.  The outcome will probably not look the same in every situation – and that is not a bad thing.  Every patient is different, so it is appropriate that their decisions and outcomes may also be different. 

elephant-in-the-roomThe elephant in the room, especially in the United States, is that the guidelines and evidence-based practice help protect the health professionals from litigation.  If they follow the protocol, their liability is reduced.  This is fueled by our desire for black and white answers. However, most patients are not inclined to pursue legal recourse for unexpected outcomes if they were part of the decision-making process and felt that their opinions were heard and respected.  Instead of teaching our new health professionals that the protocols and guidelines will keep them out of court, we should help them understand that listening to and partnering with their patients will keep them out of court AND lead to more positive outcomes (as the family defines them!). 

common-senseInstead of feeling limited or protected by the concepts of evidence-based medicine and patient-centered care, we all need to embrace what they can bring to the table.  This is what Dr. Guiang was referring to when talking about using ‘common sense’.  These concepts should be well-understood and respected by health professionals and patients because they are part of the large and small conversations in health care today.  And they can make significant differences in all of our lives. 

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.

STARS Study

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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.

Conclusions

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.

 

 

One step at a time…..

July 13, 2016 1 comment

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

Grief is often described as a ‘journey’ – and I understand why.  My journey with stillbirth began 12 years ago this month.  I’m still not sure what the ‘destination’ is, but I would describe it as a long hike.

At the beginning of the hike, I was standing at the bottom of the mountain.  Looking up at the path in front of me was overwhelming, and it was bigger than anything I had ever done before.  I had significant doubts about my strength and stamina to even begin such a task.  Part of me wanted to go around the mountain thinking it would be easier.  But that was a long trip, too and I wasn’t guaranteed a smooth path there, either.

After staring at the mountain for a long time, I started climbing the way everyone does – one step at a time.  I did a lot of stumbling and slid backwards often.  I’m still not at the top – and I don’t expect to get there.  But I have learned a few things along the way.

Be prepared

I laugh at the thought that anyone could be prepared for this type of journey.  None of us are.  But if you are at the base of this mountain, take a moment to think about the days and weeks in front of you.  You don’t have to start running the minute your feet hit the ground.  Take a deep breath, ask questions, and feel the love and support of those around you.

Use the Buddy System

It often feels like we are alone on this path.  But there are people willing to be our buddy for the trip.  It may be someone you already know, or it may be a new friend that you met only at the mountain.  This is the person who can give you suggestions, help you avoid the loose rocks, be your cheerleader when you need support to continue, and will sit down with you when you need to catch your breath.

Fuel your body

We have to take care of ourselves if we want to get up that mountain.  It’s easy to have poor or absent nutrition, develop bad health habits, or use substances as coping mechanisms.  The work of climbing this mountain is much easier if you are eating properly, getting good sleep, engaging in physical activity, not using alcohol or other substances, and seeking medical attention for health concerns.  It may not seem like a top priority at the moment – but it needs to be.

Accept a Hand

Somewhere on the way up the mountain, you will need or want to grab the hand of someone willing to help.  Don’t be afraid to do so.  It is not a sign of weakness, but of personal awareness.  Some hands help with daily tasks.  Some hands are professionals who can help you stay healthy.  Accept the help you need or that would just make the journey a little less stressful.

Take a Break

The entire mountain doesn’t have to be climbed at once.  Take breaks to catch your breath, look around, and see your new environment.  Get a drink of water, take a nap, have lunch with friends, laugh, get off the path to see the wildlife, watch the sunrise, do something you’ve always wanted to do.  These short diversions are healthy and help you prepare for the next portions of the hike.

Look back once in a while

There are probably more ‘small’ victories than you realize along the path.   Those rough patches in the journey may look like planning a memorial service, surviving milestones and anniversaries, being around babies that are the same age as your baby, returning to work, making new friends, adjusting to other people’s reactions, attempting another pregnancy, surviving another pregnancy, or more.  Give yourself credit for overcoming those obstacles!

Reach out your Hand

When you are looking back, you will see fellow hikers who are just starting their road up the mountain.  Offer them a hand through the rough patches or across the gaps.  It can be very healing to give back and it has helped me to appreciate how far I have traveled.

Be in touch with the mountain

This has been the hardest for me to learn and accept.  I resented the fact that I was even on the mountain.  Finding peace is a challenge if you are at odds with the ground you’re walking on.  In time, I began to think of the mountain not as my grief – but as my son.  This path is my journey of love with my son – not a journey I was put on because we lost him.  It’s not the mountain I had planned, but I have learned to appreciate it.  It reminds me of what is important in life and why I continue to put one foot in front of the other.

 

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,

Dad

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. 

WE. CAN. DO. BETTER.

  

Pregnancy & Infant Loss Awareness Month

October 11, 2015 Leave a comment

PAIL Month 2015

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

Welcome to October!  In the US, it is National Pregnancy and Infant Loss Awareness month.  And it is a bittersweet month for me.

It is amazing because we have an entire month to hold special events or wear PAIL ribbons and pins.  We have a sense of community that isn’t always present.  This year, many of us are turning our facebook profiles pink and blue to remember our babies and spread awareness.  Thee are memorial services and waves of light. Here in Minnesota, we just had our annual Run/Walk with over 900 people coming together to share memories and create hope for the future.

I recently returned from two international conferences where we had the opportunity to discuss pregnancy loss/stillbirth issues.  We have been asked for newspaper, radio, and TV interviews.  There is so much good energy and positive action.

I am also frustrated and upset that we even need this awareness.  I am saddened that so many families join this community every year and have a reason to be with us.    It breaks my heart that many more families are grieving in silence.

Please take this month to remember all the babies gone too soon.  But think about our community as well.  Reach out to those who may not be able to reach out for themselves.  Remember that we all grieve differently and have different needs.  Look for opportunities to share your story so that the larger community will know about our efforts and other families will not feel alone.  Celebrate the organizations, businesses, and individuals around you that are making a difference for families.  Let the world know about their good work!

This is a month where it is easy to feel that our solitary efforts are minor.  But every effort is significant. When all of our efforts are combined, we can do incredible things for this cause.  We may not have the entire NFL wearing pink and blue (yes – I admit I am jealous of breast cancer awareness!)  But we know that we are remembering our precious babies in our own ways.  We are working to reduce heartache of tomorrow’s families.  We know that this month is special because we get to say that our babies matter – every month.

If you are struggling with your grief or would like to talk to someone who has been on this path, please call our support line:  952-715-7731.

Star Legacy Foundation Kicks Off Pregnancy & Infant Loss Awareness Month With Annual Run/Walk Event!

September 15, 2015 Leave a comment

October was designated as Pregnancy & Infant Loss Awareness month in October of 1988 by President Ronald Reagan.  It’s an important time for us all to remember the babies, reflect on what has been accomplished and recommit to our vision that one day – pregnancy & infant loss will truly be a rare event.  Star Legacy Foundation holds an annual event to kick off the month filled with awareness activities.

LNBS - PAILWe are fast approaching our annual Let’s Not Be Still! Pregnancy & Infant Loss Awareness Walk/Run  Saturday, September 26, 2015.

It is already shaping up to be bigger than ever!  You won’t want to miss out!

Register Now!

Why is this important?

We do this annual event each year for a number of reasons.

  • Most importantly it is a time to bring our loss community together in ways that are not otherwise possible. There is comfort in being together in a community of other loss families, friends, advocates and supporters where everyone ‘gets it’ and there is no need to explain.
  • It is an opportunity to spread awareness about the thousands of babies that are miscarried, stillborn, or only live a short time after birth.  Through our extensive marketing efforts, we can keep these issues in the public.
  • And we raise funds that help us continue our programs and projects dedicated to awareness, research, education, prevention & family support!

What’s happening at this event?

  • Shirt back - finalIt is a time to remember our babies memories but yet celebrate what their memory adds to our lives. Again this year,  babies names will be added to the shirts as a permanent reminder of why we do what we do!
  • memorial treeWe’re adding a new event specifically to remember the babies! The Eden Prairie Parks & Recreation Department has graciously allowed us to plant a memorial tree on the grounds at Staring Lake Park. We will be dedicating this beautiful white oak tree and placing a memorial stone at the base.  All families are invited to come and paint a rock in their baby’s memory to place at the base of the tree for the memorial ceremony.  Then – take your stone home with you at the end of the day!
  • Abby Libsack Photography will be taking team photos prior to the start of the activities! Be sure to gather your team early and get your photo taken!!
  • We’ll have fun! This event is designed for the serious runner, the not-so-serious runner, the walkers, kids and toddlers!  There is something for everyone.
  • Back by popular demand, we will have face painting stations available for the kids!
  • New this year – a raffle! You can purchase tickets and drop them into the jars for the items you wish to try for!  We have lots of donated items and the list continues to grow.  Be sure to check the list often!
  • The organizer of the top fund-raising team will receive 4 – one day Disney Park Hopper Passes – a $600 value! It’s not too late to create a team or support a team!!  This year registration fees are applied to team totals!
  • Susan-Elizabeth Littlefield of WCCO will be our Mistress of Ceremonies! IMG_3319[1]
  • The producers of Don’t Talk About The Baby will be joining us. For their upcoming documentary on pregnancy loss, they are asking to video  families willing  to share their stories.    Schedule an interview with the producers here.  (Run/Walk participants will have priority for interview times.)  Interviews held in Eden Prairie, MN.
  • The 11 Angels Project of the Star Legacy Foundation will be with us to share about their care companion program. This group is looking for new volunteers.  Stop by to learn how you might be able to help other families.
  • And certainly not least of all – several of the legislators that helped us pass legislation in Minnesota this past year will be joining us! Please be sure to take a moment to thank them and tell them how much their efforts mean to you!

What do you do with the funds raised?

Funds raised at this event go to the programs and projects of the Star Legacy Foundation.  We have lots going on and your participation will help us in so many ways!  Unlike so many other nonprofit organizations, we have very little overhead and every dime raised goes to supporting our programs and projects!  This is VERY important to us and we are very proud of that fact!  Ongoing projects include:

  • Family support efforts through our 11 Angels care companion team
  • Awareness activities – both local and nationwide though our media efforts and Champion events
  • Expanded awareness through our presence and presentation at national and international meetings
  • Patient education materials designed to help expectant couples monitor their baby before birth such as our See Me, Feel me program – which is now also available in Spanish!
  • Educational events like the Stillbirth Summit
  • Nationwide support line staffed by professional grief counselors
  • Support groups for grieving families – specifically for bereaved parents; couples experiencing pregnancy after loss; and grandparents/extended family & friends
  • Health care professional education & recognition projects
  • Support for ongoing research and publication of study results
  • Continuing efforts for analysis and sharing of results from our STARS Study.
  • Development of new research studies
  • Legislative efforts for a number of issues related to our objectives.

There are also a number of exciting new projects in development that you’ll be hearing about in the months to come – all made possible by the generosity of those who  are passionate about saving babies.

What if I am unable to attend this year?

  • Even if you can’t be there in person – you can participate virtually and we will mail you one of the event shirts!
  • If getting a shirt isn’t important to you – your donations are gratefully appreciated.
  • Check out our calendar to see if we are holding an event near you! Plan to join in!
  • We work with families all over the country in planning their own events to support our programs and projects. If you would like to host such an event – let us know!
  • Mark Feb 13, 2016 on your calendar and plan to attend a very special new event to honor our babies and recognize the perinatal loss heros and efforts that are truly making a difference. More details to be announced soon!

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.

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