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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!

The power of awareness…..

August 22, 2016 1 comment

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

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

“Sometimes these things just happen.”

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

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

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

So why is this platitude used so often? 

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

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

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

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

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

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

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

Why?  Because information is power.

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

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

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

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

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

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

So how do we make this happen? 

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

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

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

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

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

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

 

 

A father’s advocacy never ends.

June 7, 2016 3 comments

by Dale Fuller, Star Legacy Foundation Board Member

I hope Landon is proud of me today.

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

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

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

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

My life changed forever that day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I love you,

Dad

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.

Mother’s Day 2015

May 6, 2015 1 comment

A guest blog by Star Legacy Foundation Board Member Shannon Renfro

May is my favorite month. In Springtime, flowers are blooming, birds are singing, and there are signs everywhere of new life. It is a wonderful time to celebrate new beginnings and make new memories. It is the month we celebrate Mother’s Day, which honors all Mothers, Grandmothers, Stepmothers, Adoptive Mothers, and more.

For me, Mother’s Day is a day that brings up many emotions – the gratefulness of my living children, a reminder of my struggles with infertility, and the stinging heartbreak of knowing that one of my children is not with us. There are so many different types of Mother’s and sadly, some go unrecognized. “Being a Mother is not defined by the number of children that you see, but by those you hold in your heart.” In my heart, I hold 9 children, although you can only see 3. I make a point on this day to recognize all of my friends who are Moms, especially those who hold their babies in their heart.

May 18th marks the 6th birthday of my daughter, Savannah Grace. Although you cannot see her, she is very much present with us. I try not to define her by the grief I feel, but rather by the joy of knowing that she is still very much a part of our lives. Every family photo, every time I look around the dinner table, not a day goes by that I don’t think about her and miss her. And yet, she is with us. She is there – in the warmth of sunsets, the beauty of the tulips, the butterfly that hovers, the chirping of the birds, the song that comes on the radio when I am feeling sad. Yes, Savannah is all around us.

It wasn’t always like this. For a long time, my grief kept me in a very debilitating place where it was hard to see beyond the pain. My daughter’s death, at 40 weeks and 3 days was preventable. I never in a million years thought that in this day and age with as much advanced education and technology that stillbirth still occurred. But it does. It happens to 71 families each day, 26,000 per year in the US. These numbers are shocking and startling. And it happened to me, even though I didn’t fall into any of the “risk categories.”

But if I could share with you one thing about grief after 6 years, it would be that it does get better. The load lightens, and there comes a day where you cry less, hurt less, and begin to find joy again. I can’t tell you when exactly it happens, but it does. I spent years being angry at what happened. I was angry at everyone – at my doctor, at the hospital, at my friends who had babies, at strangers. It was debilitating and hurt me in so many ways. I suffered 4 miscarriages during this time. Loss upon loss is overwhelming. But there came a day when I had to make a choice. I had to decide if I was going to continue to let this anger eat me up and destroy my relationships or I was going to find a way to find beauty within the tragedy. I think that turning point came from finding The Star Legacy Foundation.

Find beauty within the tragedy – how can you honor the life of your baby and make good come out of sadness? Can you join a non-profit in your community, volunteer at your foodbank, share your story at a support group, or something else? Building a garden or plant flowers, participate in a Walk or 5k, make a donation in your baby’s name, or come up with your own random act of kindness.

Another big piece of the puzzle for me was forgiveness. To forgive someone who doesn’t take responsibility or even face you after inadvertently causing your child to die can be a real challenge and may seem impossible for most. But it was a choice. It took me nearly 3 years to get to that point. Forgiveness isn’t about the person who harmed you or your baby; rather, it is something that only you can allow into your heart. You can choose to forgive when you are ready. It doesn’t negate what happened or fix it or bring back your baby. It is about releasing the ropes that tightly bound your heart in anger and keep you from finding peace. And it’s OK if you aren’t there yet. But I hope you will be one day.

Today, I am grateful for my daughter Savannah – not for her death but for her life. I was given 40 weeks and 3 days with my precious daughter and although I would have given anything to have more time, there was a different plan. Savannah has changed me – she has made me a better wife and mother, a better friend, and a more productive member of my community. She has made me more compassionate and understanding. She has taught me the gift of life, the preciousness of a day, of an hour. Our time together was brief, but it was an amazing blessing. While I spent many years wishing it had been me and not her, I have come to accept that there is just more work for me to do.

What will you do with your gift of time? How can you make a difference in someone else’s life? As Mother’s Day is upon us, can you find your own beauty within the tragedy? Losing a child is never easy – you can never prepare for it. But you can heal and you can move forward, never forgetting your baby, but honoring him or her along your journey.

On this Mother’s Day, I honor all of the Mothers, Grandmothers, sisters, aunts, nieces, friends, neighbors, co-workers – all of those who are missing a member of their circle. But there is joy in suffering, there is more we can do to make a difference, there is more we can do to prevent stillbirth and promote healthy pregnancies and healthy babies. Think of your friends or family members that might be pregnant – will you share the information about healthy pregnancies and stillbirth prevention found on the website? You might just save a baby. And if each of us did this, we would be honoring those babies we couldn’t save.

Read more about Shannon and her work with the Star Legacy Foundation.

Do We Really Need OBs?

February 1, 2015 3 comments

by Lindsey J. Wimmer, MSN, CPNP, CPLC

Looking at many of the trends in obstetric care of recent years, it appears that obstetricians aren’t really needed.  The increasingly-popular desire toward home deliveries further supports this point.  There are many rules that tell our OBs exactly what to do, when to do it, and how to do it, so it seems that anyone who can follow directions should be able to perform their duties.  We have turned obstetric care into a recipe.  As long as the ‘chef’ doesn’t stray from the recipe, all will be great.  Right?

Clearly, I’m being sarcastic and exaggerating in the process.  But the thought has crossed my mind recently.  I sympathize with the obstetricians who are often caught in a difficult spot between their patients’ desires, their medical opinion, their Hippocratic obligation (“primum non nocere” – first do no harm), and the rules from hospital, professional organizations or insurance companies.  Their ability to do what they are trained to do and that they believe is in the best interest of all involved must often be compromised.  The best example of this phenomenon at the moment is the restriction of delivery before 39 weeks gestation.

complianceIf you’re not familiar with this movement, the short version is that physicians are now prohibited from scheduling a delivery before 39 weeks and 0 days unless one of the specific criteria is present. Even at 39 weeks if there are no cervical changes that target moves out as far as 42 weeks.

I  was trained, as were most obstetricians currently in practice that ‘full term’ was 37-40 weeks gestation.  Suddenly, that definition has been changed to 39 weeks by ACOG.  Yet, I have not seen any research to show a solid reason for this.  Yes – many babies have fewer complications at later gestations, but this is not an absolute fact and I don’t understand the benefit of changing the definition.  (The fact that it was changed without solid research is particularly irritating to me because they often tell stillbirth advocates that changes to practice cannot be based on provider experience/knowledge or anecdotal evidence – yet that is exactly what they have used in this case).

When I first heard of this initiative, it was presented as an education effort to reduce convenience deliveries before 39 weeks.  It’s safe to say that the vast majority of people understand that it is not good practice to induce labor because the mother is tired of being pregnant, she wants a specific doctor to deliver her child, or it works better in the physician or family’s schedule.  But I also know that many deliveries that were scheduled before 39 weeks were for reasons other than convenience – including my own 4 children.  In my opinion, best practice lies somewhere between convenience and the specific criteria listed (as I can think of many conditions that place the baby at risk that are not represented in that list).  The list of exceptions to the 39 week rule that will “buy your ticket” to early delivery consists mainly of maternal conditions such as hypertensive disorders, oligohydraminos, prior classical cesarean delivery, gestational diabetes, placental abruption, premature rupture of membranes, and cholestasis.  However, indicators of fetal distress such as decreased fetal movement or even previous history of stillbirth are absent from the list and there are others we believe should be considered in these decisions.

It is a great example of how a simple and good idea can be taken to an extreme.

Many organizations jumped on board with this idea since 2008 – including ACOG (professional organization of obstetricians), AWOHNN (professional organization of women’s health nurses), ACNM (professional organization of nurse midwives), March of Dimes, JCAHO (hospital accrediting organization), many insurance organizations and others.

There are financial consequences for providers and/or hospitals that do not follow this guideline.  The Leapfrog Group, a coalition of big corporate health-care purchasers, in 2009 began asking hospitals around the nation to report their rate of early term induced births that weren’t medically necessary according to the extremely short list of approved “medical necessity”. Beginning Jan. 1, 2013 United Healthcare, the nation’s largest private health insurer, began paying hospitals more money if they take steps to limit early deliveries and show a drop in their rates. Insurer Aetna is funding a March of Dimes program that helps hospitals adopt implementation policies, and it is using claims data to advise newly pregnant women of the importance of 39 weeks in the womb. (Of course this data does not even discuss the potential or rate of stillbirth.) Aetna asks hospitals to report their rate of earlier elective deliveries, and it highlights hospitals that meet Leapfrog targets on its website.  The hospital accrediting organization, JCAHO implemented ‘quality standards’ that requires measurement and tracking of early so called elective delivery rates.  This in and of itself isn’t a big deal – but noticeably absent is a quality standard that tracks and measures the numbers of stillbirths in any given hospital. Hospitals take JCAHO standards very seriously because federal funding (medicare/medicaid) funding is tied to their accreditation.

This all appears understandable because after all – who doesn’t want healthier babies?  NICUs are scary places and everyone would rather their baby not ever need their care.  In addition, the care provided in NICUs is extremely expensive.  If we can keep babies out of NICUs, it will mean babies are healthier and we save millions in health care dollars.

Sounds like a no-brainer.

One of the major problems with is that we are assuming every pregnancy can and should continue until the mom goes into labor naturally after 39 weeks.  However, we know that that we have significantly lowered the fetal death rate, the neonatal death rate, the birth injury rate, and maternal morbidity and mortality rates by utilizing the technologies that have been developed over the last 50-60 years.  Much of that happened because we were able to deliver babies before they or their mothers suffered serious or fatal consequences.  It is not routine care to look for fetal distress without other symptoms.  That means there could be a lot of babies in distress and we are making them wait for delivery.  In these cases, the NICU might be their best option for survival!  NICU care can be a wonderful thing.

We’re also assuming that every baby born between 37 and 39 weeks will need to be cared for in the NICU.  This is not the case. Millions of babies are born at that gestation around the world without needing any extra care or interventions.  Even if they do need help, it may only be for a few hours or days.

I was taught that if something sounds too good to be true, it probably is.  Where’s the catch?  In this case, the catch is that sometimes our obstetricians are saving our babies’ lives by removing them from an intrauterine environment that is no longer the optimal place for them to be.  It is true that some of these babies may need NICU care after delivery.  But is that the worst possible outcome?  I know thousands of stillbirth families that would have gladly spent time in a NICU giving their child a chance at life if the other option was to be planning their child’s funeral.  We must keep in perspective ALL potential outcomes of our decisions.

This is the balancing act that obstetricians must deal with on a daily basis – particularly in earlier gestations.  A mother’s health or the baby’s status must be very compromised for the physician to feel delivery is the best option at 24 weeks gestation (as an example).  But until recently, that decision at 37-38 weeks was much easier for the doctors to make.  Now – it has another layer of difficulty because of the scrutiny they will endure for their clinical decisions.

I am routinely hearing stories about families who make a decision with their obstetrician that delivery is the best option, yet they are turned away from the hospital because they don’t meet the far too short list of criteria for an ‘early’ delivery.  The decision-making process has been taken out of the hands of the patients and the providers.  This is wrong on so many levels – both clinical and ethical.  We need the people who have been involved in the pregnancy all along, who are evaluating the circumstances, and who will be most affected to be making the decisions.  Not ‘experts’ who are thinking about general populations or insurance companies thinking about their expenses and their shareholders.

aj_stop_sign_angled_clip_art_18120We also hear about women who go into labor at 36-39 weeks.  When they present to the hospital, their labor is immediately stopped.  This would not have been an issue just a few years ago.  Most troubling is when the labor is stopped, the family is sent home, and they return in the following days or weeks to deliver a stillborn child.   It appears that these pregnancies had reached the end of their ability to sustain the baby, yet we intervened for a rule that was created without adequate research or reasoning.

Medicine is not a cookbook.  Every person and every situation is different.  Sweeping rules that remove autonomy from the patient and disregard the professional opinions of the providers are asking for trouble.  And that is what has happened.  Data is beginning to emerge that these hard-stop rules are working in regard to the number of babies who are delivered before 39 weeks, the number of babies who are admitted to NICUs, and the amount of money spent on NICU care.  However, the data also indicates that the number of stillborn babies born at 37-39 weeks is increasing.  Other victims of this new rule are babies that are stillborn after 39 weeks, but induction wasn’t allowed because mom didn’t have sufficient cervical changes to qualify for delivery.  These are extremely viable babies that we have the ability to save!

Patients have the right to refuse any medical treatment they don’t want for ANY reason.  This is well-established principle of medical ethics and honored time and time again.  We ensure they are counselled about the pros and cons of all decisions.  If a patient is making an informed decision – we must honor that (even if we disagree or would not choose the same for ourselves).  However, patients don’t have the same level of control over their health if they choose a medical treatment that the hospital, professional organization, or insurance company doesn’t want to happen.  We should treat it the same as we do refusal of treatment.  Educate the family of the pros and cons of ALL options, and honor their decision.

The “39 week rule” is a good idea taken to an extreme with significant, unintended consequences. 

I have learned of conversations our obstetricians have with their colleagues around the world will hear about what is happening with this issue in the US.  The international OB community’s first reaction is disbelief that it is really being implemented in such a way.  When they are reassured that it is true, they are flabbergasted.   It seems absurd to limit the expertise of the medical professionals.  I agree.

In adopting this practice, our medical establishments have chosen mortality over morbidity.  They find it acceptable for more babies to die in utero in order to reduce the number of babies who need NICU care.

  • It bothers me that our society is letting this happen.
  • It bothers me that families have been unethically removed from the decision-making process.
  • It bothers me that our providers have their hands tied when it is their practices and licenses at risk.
  • It bothers me that we don’t value the impact of stillbirth on families enough to end this ‘rule’ immediately.

We absolutely need obstetricians and their expertise.  I, for one, want my doctor and I to make medical decisions for my family together.  We should all have that right.

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Does this sound like your story?  Were you told your delivery must wait until 39 weeks (or later)? Did you spontaneously go into labor between 32-39 weeks and have your labor stopped? If so, we’d like to hear your story whether your story ended joyfully or otherwise.  Click here to share your story.  Stories submitted will NOT be posted on any website and will only be used anonymously.  

A blog about blogs

January 10, 2015 10 comments

by Lindsey J. Wimmer, MSN, CPNP, CPLC 

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

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

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

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

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

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

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

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

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

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

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

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

What is IUGR?

November 10, 2014 5 comments

by Lindsey Wimmer, RN, MSN, CPNP, CPLC

Intrauterine Growth Restriction (IUGR) is receiving a lot of attention recently as it relates to perinatal loss. I am very encouraged by this and the promising studies that are being done.  A recent video has been circulating through social media that highlights the issue.

I’ve been getting many questions from parents about what IUGR actually IS.  I think it’s a very important question.

The most important thing we need to understand about IUGR is that is it a symptom, not a diagnosis.  

Providers will often provide this as a diagnosis if there is a poor outcome in a pregnancy or even identify it as a cause of death.  Being small does not, in itself, post a lethal problem.  But WHY a baby is small very well could be a serious problem.

Studies have indicated that more than half of all stillborn babies are growth restricted. This tells me that these babies had issues going on through the pregnancy that were limiting the baby’s ability to develop and grow appropriately – and, ultimately to survive.

Growth restriction, by definition, requires us to recognize that a baby’s growth pattern is not following expected norms.  In pediatrics, we do this with every single well-child visit from birth to adulthood.  If a child is at the 75th percentile for his/her age and is consistently at that mark, we consider that appropriate growth.  However, if a child is usually at the 75th percentile and is suddenly down to the 25th percentile – we are going to be investigating because that is a significant change.  Growth charts can be utilized for fetal growth in the same way – and usually are when IUGR is suspected and identified during a pregnancy.  The problem is when a diaghnosis of IUGR is made from a single assessment.  From a single point in time, it is not feasible to identify if a baby measuring at the 25th percentile is acceptable or not.  It depends on what the baby has done in the past, but we often don’t have that information.

Most providers and facilities have identified trigger points at the 10th percentile or 5th percentile.  If a baby is under those marks, they may be diagnosed with IUGR.  This can be problematic because it may mean that we are concerned about a baby that is naturally a smaller person OR it may be that we don’t catch a baby that is very sick until it progresses to this extreme.  It is more appropriate to consider a baby “appropriate for gestational age” (AGA), “small for gestational age” (SGA) or “large for gestational age” (LGA) rather than IUGR if we are only looking at data from one assessment  These terms simply describe the child’s size without indicating if it is a concern or not.  However, it is important to remember that any of these babies could ALSO be growth restricted – but we need more information to know.  Once a baby is born, if we identify growth restriction (known as ‘failure to thrive’ in the pediatric setting), we will begin looking into potential causes.  We look at the sources of the baby’s nutrition, the baby’s anatomy and physical health, the baby’s behaviors and patterns, the baby’s environment, and more.  The baby’s size is considered a symptom – not a final diagnosis.  We may not be able to directly affect the baby’s growth, but we can address the underlying cause (in most cases) and indirectly improve growth.  The growth pattern is simply another vital sign that indicates how well the baby is doing.

This isn’t always the approach to baby’s growth (or restricted growth) in obstetrics.  Any baby diagnosed with IUGR should be having serial ultrasound measurements and further testing to identify the cause of the limited growth and the baby’s tolerance of the issues.  Examples could include placental concerns, restricted blood flow through the umbilical cord, infection, or genetic or anatomical abnormalities. This information gives the obstetrical providers information about how to manage the pregnancy moving forward.

Probably my biggest frustration with IUGR is that in ‘healthy’ pregnancies, it is only looked for by measuring fundal height (the tape measure of mom’s ‘bump’). This method has been noted in literature to be faulty and neither sensitive or specific.  But it continues to be the standard of care because it is easy and inexpensive.  I am very concerned, however, that this practice keeps us from identifying babies that are struggling under our radar and we lost a chance to intervene and help them survive and thrive. The technology exists for ultrasound measurements to be taken regularly throughout the pregnancy to better assess baby’s growth.

Many stillbirth families are told that their baby died of IUGR, yet they did not have any idea this was a concern before the baby had died.  Further, they aren’t given any information about WHY their baby had IUGR.  These are significant omissions that could have implications for parental grief, management of and health of subsequent pregnancies, or for public health stillbirth prevention efforts.

Clinical Concerns In The Rainbow Pregnancy

May 28, 2014 2 comments
 
By Lindsey J. Wimmer, RN, MSN, CPNP
Executive Director, Star Legacy Foundation

As I mentioned in my last blog, coping with a pregnancy after a loss are among the most commonly asked questions we get from stillbirth families.  Primarily, the questions we get are how to work with the physicians and midwives to manage the subsequent pregnancies.  My last blog focused on the anxiety and emotions that come with pregnancies after loss.  This time, I will try to address the medical management.  This is a difficult topic because every pregnancy is very different, and it all comes back to the individual provider’s approach.

  • My first suggestion is to talk to your OB either before becoming pregnant or as early in the pregnancy as possible to discuss what you all expect and plan to do through the next pregnancy.  It is important that the family and the provider clearly understand the needs of each other and can all feel comfortable with the plan.  If this isn’t possible, it may be an indicator that the family should find another provider to care for the next pregnancy.
  • Next, do what is possible to control, manage, or eliminate any medical concerns for the mother.  This, obviously, isn’t always feasible, but it is preferable whenever possible.  Many parents choose to have genetic testing and counseling done at this time as well – particularly if a chromosomal issue was known or suspected to have played a role in the loss.
  • Be sure you are healthy!  All women considering a pregnancy are encouraged to begin taking folic acid and eating a healthy, balanced diet.  If you are overweight, it is advisable to achieve a good weight before your pregnancy – your provider can provide you advice on the best approach for you. Smoking, alcohol, or drug use should be stopped and programs may be available to assist with this process – again, just ask your provider.  Give your baby every opportunity to thrive before he/she is born!
  • Once pregnant, this pregnancy should be considered ‘high-risk’ based on the previous loss.  A visit with the OB early allows for more detailed discussions about the plan, confirmation of the pregnancy, and ultrasound for dating the pregnancy.  If the mother’s history indicated, additional tests may be done at this time.  Also during the first trimester, the PAPP-A blood test can provide information about risks of chromosomal or anatomical concerns, and it is also an indicator of placental function – a benefit that is not always discussed but vitally important.
  • During the second trimester, the usual ultrasound at 18-20 weeks will be done to assess the baby’s anatomy.  I encourage providers to also assess the baby’s growth, placental characteristics, cord insertion, and blood flow through the umbilical cord.  Ask your doctor about growth charting based on ultrasound measurements rather than the tape measure approach so that a change in growth for your baby can be easily identified.
  • The Quad screen provides more information about placental function and risks of concerns about the baby’s health. Diabetes screening and follow-up testing will be completed as is routine for all pregnancies.
  • In the third trimester, all pregnant women should be aware of their baby’s movements, personality, and tendencies.  Any changes to this baby’s norm should be reported and investigated immediately. Each baby is different – so don’t try to compare this baby with your previous ones or your friends. You can learn more about this process in our See Me, Feel Me materials.
  • Monitoring for signs of infection or Group B Strep status will be conducted as usual.  Providers are encouraged to begin weekly ultrasounds to monitor and track the baby’s growth, the amniotic fluid index, and placenta and cord characteristics. These often begin at 28 weeks gestation.  Some providers will include in this evaluation a biophysical profile (ultrasound with specific criteria regarding baby’s behaviors) and non-stress testing with kick counting.  Other providers will wait until 32 weeks to begin these additional tests.  Again, discuss these plans with your provider early on.
  • Any concerns or declines in the health of the mother, baby, or pregnancy should prompt a discussion between the family and the health providers about options and pros/cons or risks/benefits of any decisions.  This conversation may mean early delivery of the baby if the intrauterine risks of continuing the pregnancy are too great.  This is especially true at later gestations and as the pregnancy approaches full term.  If all goes well and as expected, early delivery (by induction or c-section as appropriate) should be scheduled by 39 weeks, or earlier if desired by the family and the baby’s lung maturity has been confirmed by amnioscentesis.

This is a VERY general guide, but can be a place to start the discussion with your healthcare provider.  Some OBs will also include a perinatologist or maternal-fetal medicine specialist in your care.  There are MANY variations to protocol, but the most important thing is that you and your provider are in agreement about how things are going, what should be done, and the coming plan.

As the pregnancy progresses or issues arise, continue to have open discussions to make adjustments as needed.  If you ever feel uncomfortable or have persistent worries, DO NOT hesitate to immediately mention this to your provider and insist your concerns be thoroughly investigated. There is no question or concern that you have that should be dismissed or avoided by you or your healthcare team.  

2014 Stillbirth_Summit logo

Uma Reddy

Dr. Uma Reddy from the Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD) has done a significant amount of work in this area.  She will be one of the speakers at the Stillbirth Summit in June 2014 – you won’t want to miss the chance to hear this nationally-recognized stillbirth researcher!

Tracey MillsIn addition, Dr. Tracey Mills from the University of Manchester is involved with a clinic in the UK dedicated to caring for families during a rainbow pregnancy!  She will also be at the Stillbirth Summit and will be sharing her protocols, experiences, recommendations, and more!  This will be a must see presentation for all providers who care for women during a subsequent pregnancy and all families anticipating or hoping for a rainbow baby.

Ruth Fretts

Dr. Ruth Fretts has written several opinion pieces for the American Congress of Obstetricians and Gynecologists (ACOG).  She will be talking about the Stillbirth Scandal that often comes into play with subsequent pregnancies as well.

 

Some of my favorite medical articles about caring for subsequent pregnancies are below.  Feel free to share them with your provider and use them as a place to start your rainbow conversation.

Antepartum Testing for Women with Previous Stillbirth

Prediction and Prevention of Recurrent Stillbirth

ACOG Practice Guidelines — Management of Stillbirth

For more information or to have See Me Feel Me materials mailed to you, email me at lindsey@starlegacyfoundation.org.

 

 

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