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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

At least I’m not ‘high-risk’…..

March 16, 2016 2 comments

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

Pregnancies are usually characterized into high-risk and low-risk categories.  The ‘high-risk’ pregnancies are those that have documented and accepted risk factors for poor outcomes.  They include concerns like anatomical and genetic abnormalities in the baby, multiple gestation pregnancies, pre-eclampsia, gestational diabetes, and some maternal health conditions.  These pregnancies are often co-managed by a maternal-fetal medicine specialist and are followed using a protocol that involves additional testing and more frequent monitoring.  The ‘low-risk’ pregnancies are any that don’t meet the criteria.

The stillbirth rates for ‘high-risk’ pregnancies are a fraction of what they are for ‘low-risk’ pregnancies.

According to the Society for Maternal Fetal Medicine, incorporation of this proactive care can decrease the rate of perinatal mortality from 8.8 to 1.3 deaths per 1000 births (Society for Maternal Fetal Medicine, 2010).  The current US stillbirth rate is 6.1 deaths per 1000 births.  That seems backwards because the label implies the higher rate would be in the ‘high-risk’ group.  I believe there are many ‘low-risk’ pregnancies that could/should be managed by this same protocol.

There are many, many known risk factors for stillbirth and other poor pregnancy outcomes that don’t qualify for high-risk care.  Included in that list are:  maternal obesity, advanced maternal age, non-Hispanic black race, first pregnancy, maternal drug use, use of IVF or other reproductive technologies, umbilical cord or placental abnormalities, pregnancies over 40 weeks gestation, and a mother who had a previous poor pregnancy outcome (such as stillbirth, preterm birth, neonatal death).  These women are not routinely given the opportunity to benefit from a higher level of care.  We hear from women every week who are in these categories, yet they are reassured that there is no reason to be concerned.  We also hear from women with these characteristics that are turned down as patients by maternal-fetal medicine specialists because they don’t qualify for that level of expertise.

Even more concerning are the women who have several of these ‘soft’ risk factors.  A 40 year old, obese, African American woman who used IVF to conceive should make every obstetrician or midwife nervous.  Yet, most will consider her ‘low-risk’.  We don’t have a magic study that tells us how to prevent all poor outcomes for these women – but we can use common sense and take advantage of the tools available to try.  At the very least, we can have an honest conversation with the family about these risk factors and work together to identify a plan that makes sense to those most involved and affected.  One of the options would be to offer them a high-risk pregnancy management plan.

I am also concerned that the current management of many of these risk factors is to prevent them from being true.  Of course – it would be great if every woman could choose to be pregnant before they are 35 years old, be an ideal weight, not need fertility treatments, and not use recreational drugs.  But these aren’t always practical.  And even so, not considering those issues as risk factors once a pregnancy is a reality for these women is unethical.  We have to have a better approach to managing these risk factors, even if they are modifiable.

For the women who are managed as high-risk, the classification can also be challenging because their management is often centered on the one piece that earned them that status.  A woman with gestational diabetes will be seen more often with diligent monitoring of her blood glucose levels, but may not have any attention paid to the effects on the placenta, be asked about her baby’s movements, or consider that this is her first pregnancy, she is 38 years old, and she is at 40 weeks gestation.  These women often have a false sense of security because they know they are getting a higher level of care and assume that care is comprehensive.

The number one comment I receive during these conversations is this:  “If we consider the entire list of risk factors, every pregnancy would be classified as ‘high-risk”.  YES.

There is no such thing as a low-risk pregnancy. 

Every mother, every baby, every pregnancy, and every family deserves the best we have to offer.  Comprehensive, high-risk care protocols should be offered to every pregnant woman.  The education about all those risk factors and an honest discussion about the options should be automatically provided for each pregnancy.  Each family will decide how aggressive they want to be – and that is what medicine is all about.  But keeping that information and those options from large numbers of women is not doing anyone any favors.

High Risk Pregnancy FactorsThis is not to say that I believe this care will prevent all stillbirths or other poor outcomes.  It won’t.  And I don’t expect our health professionals to be super heros with super-human talents.  I just want them to give their patients credit for being rational, intelligent people who simply want what is best for themselves and their babies.  And that will look different for each patient.  That is where the art of medicine comes into play.  Having all the information doesn’t scare pregnant women – it empowers them.

Yes – there is a financial cost associated with much of this.  However, it is impossible to put a dollar amount on the life of a baby and the grief experienced by a family if that baby does not get to go home with the family as planned.

I want our health professionals to worry about our HEALTH first, and our wealth second.

This is part of the conversation, but families need to know their risks and have information about the pros and cons of proactive care (including costs) in order to make those decisions.

If it were up to me, every woman would be offered what is currently considered ‘high-risk’ care, but it would also be comprehensive and include multiple discussions with the families about any and all risk factors that are present and the options available to manage them.  I hope our health providers would want to do this because it is utilizing the technology, intelligence, and ethics of 21st Century health care.

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