A Father’s Love: Promises For My Angel

June 16, 2015 5 comments
A Father's Love Chris Duffy & Reese Christine

A Father’s Love
Chris Duffy & Reese Christine

By Star Legacy Foundation Board Member, Chris Duffy in honor of Father’s Day 2015.

 

On November 2, 2014 at 4:47 p.m., our family was robbed. Robbed of a beautiful red-haired girl with so much potential.

Our daughter, Reese Christine Duffy, was born without a heartbeat less than 24 hours before her scheduled delivery. The umbilical cord was wrapped around her neck, but that didn’t stop her from looking like a perfect baby girl.

I have always wanted a daughter. I knew I would be good at treating my little girl like a princess, intimidating her boyfriends, and walking her down the aisle with pride. This Father’s Day, it would be easy for me to dwell on the fact that I don’t get to do these things with Reese.

But I’ve done enough dwelling over the last seven months. So instead, I’m going to make a list of promises to my cherished daughter.

Reese Christine, I promise…

1) To look at your picture and think about you every day for the rest of my life.
2) To take good care of your mom and older brother.
3) To talk about you often so that our children will be excited to meet you when they arrive in heaven.
4) To continue sharing your story with anyone who will listen so that they understand that life is precious.
5) To do something every day that will make you proud, because I know you’re watching me like a hawk.
6) To cherish every moment with your brother, even when he’s acting like a stubborn toddler.
7) To make sure that your mom doesn’t blame herself for what happened. You and I both know she did an extraordinary job carrying you for 39 weeks.
8) To talk to you in moments of elation, despair, and anything in between.
9) To always remember the countless gifts you have given us.
10) To hold you and never let go, when I meet you on the other side.

Happy Father’s Day, Reese. I am honored to be your dad.

Reese Christine Duffy was stillborn into the arms of her parents, Chris and Amanda, and big brother Rogen on November 2, 2014 due to an umbilical cord accident.  Chris joined the Star Legacy Foundation Board in 2015 and currently serves as the Board Vice Chair.  Learn more about the Duffy’s here.

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.

Home Fetal Monitoring and One Devoted Grandfather

February 25, 2015 6 comments

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

Guest Blog by Catherine Alford

Jason Collins and babies

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

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

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

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

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

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

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

cat and jason

Cat and her Dad peeking at the tiwns!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Umbilical Cord FAQ

December 6, 2014 7 comments

By Lindsey Wimmer, MSN, CPNP, CPLC

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

The Whole Truth

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

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

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

Should I worry about the ‘nuchal’ cord?

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

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

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

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

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

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

Why should I say anything about a cord issue?

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

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

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

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

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

 

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

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

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

Cesarean section is the only cure for a nuchal cord.

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

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

Umbilical cord accidents don’t happen very often.

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

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

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

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

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

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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.

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