Baby After Loss

While the central focus of this blog is advocating for safer practices in midwifery, we also recognize the importance of supporting families who have endured loss and injury along the way.  This post in particular, begins to document the personal journey of life inevitably moving forward after loss, and the complexities that come along with it.   

The journey for us started with a feeling that something about Magnus's death wasn't right.  We started asking questions, and quickly learned there were many obviously negligent practices that took place in our care.  Much of the past, nearly two years now, has been spent seeking accountability and reaching out to help others.  Those two efforts have been enormously healing in and of themselves, and will continue to be a part of what we must do.  I have found the way in which we perceive Magnus's love to be present with us every day, leading us forward, and the way we can talk about him as a family to be a great comfort. 

It hasn't been an easy journey by anyone's standards.  The most difficult moments seemed to come when they were least expected.  Last week for example, we went as a family to a 20 week ultrasound for a baby we're eagerly, yet anxiously, expecting to arrive this summer.  This is our third pregnancy since Magnus's birth and death.  We have hoped to have another baby for many reasons, but fully knowing that nothing could replace Magnus.  This entire pregnancy has seemed surreal.  It seems as though my husband and I are bracing ourselves for the moment when someone pulls the rug out from underneath us yet again.   I think it's much like self defense, like preparing yourself for the worst, in case things don't work out.  

We went to the ultrasound last week full of nervousness, and hoping everything would be okay.  We took our 4 year old son, who wanted to also see his brother or sister on the screen.  Everything turned out great, in fact we're expecting a girl.  What surprised me was the flood of emotions that came afterward.  We are excited to be having a girl, and in a way glad that it will be a different experience than any we've had before.  At the same time, I found myself struggling with such a definitive move forward in our lives.  I don't want to ever forget Magnus, and I know that we won't, but things felt more real after seeing our baby on that screen.   We also were mentally prepared for raising two boys.  We had hoped for a girl so things would be different, but when it turned out to be the case, we found ourselves emotional about shifting away from the idea of having two boys to raise.  Before this baby, I always felt like we had two children, one who couldn't physically be here with us.  Now that has suddenly shifted to feeling like we have three children, still one who can't be here.

We feel so grateful for this baby on the way.  It's difficult though when I know we likely wouldn't have attempted another pregnancy had things turned out differently with Magnus.  It's an awkward sort of blessing and tragedy all rolled into one.  I had heard other people refer to their "Rainbow Babies", and never quite knew what it meant.  In the middle of my emotional roller coaster last week, I came across this beautiful description of what the term means:

       A "Rainbow Baby" is a baby conceived after the loss of another child.

      "Rainbow babies are the understanding that the beauty of a rainbow does not negate 
      the ravages of the storm. When a rainbow appears, it does not mean that the storm     
      never happened or that the family is not still dealing with its aftermath. What it 
      means is that something beautiful and full of light has appeared in the midst of the   
      darkness and the clouds.  Storm clouds may still loom over but the rainbow 
      provides a counterbalance of color, energy, and much needed hope."  
     (Author unknown)

Her words so eloquently summed up exactly what I had been wrestling with.  And so we will celebrate this rainbow baby, the light that brings us much hope.  We will try to trust that things will go the way we hope they will, and try to push out the fear, the harsh reality that too many times it does not.   We will never forget what happened to Magnus, and will be dealing with the aftermath for a lifetime to come.  The most challenging part is finding security in life, trusting, and enjoying the good, instead of bracing for the next big blow.  We work hard on that daily.  We refuse to submit to sadness, (even though it still often creeps in), and instead look for ways to "grab the good" from every situation we face.   

My favorite good moments from the ultrasound experience were the sigh of relief I heard from my husband when we could see and hear the heartbeat.  It was when Jonah's baby sister lifted her arm and "waved" at him, and the smile of pure love that spread across his little face.  It was learning that it is okay to be happy, without one bit of lost love for Mangus.  

The Delicate Relationship Between Assessment and Safety

If you've ever taken the time to read loss stories from families across the country, you'll start to notice alarming similarities.  One of the most rank, is a severe lack in proper assessment before, during, and after labor.  Our blog often brings to light dangerous practices taking place in out of hospital birth, in an effort to identify core issues that need to be addressed if midwifery is going to safely offer women options in childbirth.  Proper assessment during all parts of pregnancy, childbirth, and afterward is a vital component to improving safety and overall outcomes.  Much work is to be done.  The question that lingers in the meantime is how does a mother know when her care is not appropriate when assessments have fallen by the wayside?  We aim to share some of that insight here.  

There are a million and one assessments that can be done for various reasons.  No two women are alike, and we all have different journeys in pregnancy.  There are however, a few key prenatal assessments that are often ignored, downplayed, or mistreated in the out of hospital birth community, that have lead to several unnecessary infant losses across the country.  In many cases, had these assessments been done, interpreted correctly, and treated appropriately the babies would be alive today. 

Key Prenatal Assessments
Rh Factor
Gestational Diabetes
Group B Strep
Ultrasound       (Video of an ultrasound)
(**Ultrasounds are not always considered a necessity.  They can however, offer your care provider a wealth of information about factors that directly impact you and your baby's safety.  ~ blog post about ultrasounds, and why they matter coming soon ~ There are times when ultrasound can give your care giver vital information that should not be skipped, for example when you're expecting a breech baby.  Check out the link to learn more.) 

Important Issues with Assessment
There are three primary issues with assessment as it pertains to out of hospital birth.  

1) The first issue is the way in which assessments are downplayed, ignored altogether, or presented as "options" by some midwives.

There is a critical difference between choice and subtle persuasion.  If an ultrasound, for example, is offered at 20 weeks, but then followed up with statements about how there really isn't any reason to do one, or that research doesn't necessarily prove its safety, or how they aren't very accurate anyway...a mother isn't likely to feel that the assessment is very valuable.  

Another common example is Gestational Diabetes Screening.  Many midwives will consider your nutritional habits good enough.  They will tell mothers, "your body can't grow a baby too big."  In our case, despite having gained 60 pounds with a 10 + baby, our midwives told us that the test often is wrong, and that the solution would be a dietary change anyway if the test proved positive.  We were led to believe the test was a waste of time, and hence "declined" doing it at all.  Our care providers certainly didn't think it was necessary.  The truth about Gestational Diabetes?  It can be very dangerous for your baby if uncontrolled and undetected.  Yes, your body can grow a baby too big to for a safe vaginal delivery. 

Midwives will "offer" or claim they offer comprehensive prenatal care and testing, when in fact they do not.  They usually keep a checklist of routine labs/tests and have the client initial that they've "declined."  If your midwife, or her webpage vaguely states that they "counsel" on prenatal testing, you'll want to be sure to ask specific questions about what assessments they value, and how they will be done.  Please visit this link about Informed Consent to learn more about how to be truly informed.  If you haven't been told about the benefits of a given assessment, and clearly understand the value behind them, you aren't getting all of the information you need to make a decision.  There is a reason why the assessments on this page are considered "routine" in the medical world, and it isn't so doctors can make millions of dollars on unsuspecting pregnant women.  

Assessments are even more important if you're considering an out of hospital birth to ensure your pregnancy is meeting important safety criteria to be a good candidate.  Home birth is not safe for everyone or every pregnancy, and without proper assessments, your midwife cannot appropriately monitor your pregnancy within boundaries.  The unfortunate truth is that many out of hospital midwives don't have boundaries at all, which makes it even more dangerous than it has to be. 

2) The second issue is a severe lack in knowledge and accessibility when it comes to how to reliably perform, and interpret assessments.

What a midwife claims to offer versus what they are actually able to offer are too often two very different things.  In Michigan, there is only one place a CPM can get lab work done without a physician back up, and that's at U of M.  Many do not have a relationship with an OB, and therefore end up sending clients to an expensive, vanity ultrasound facility as their only option.  Even then the baby's, size and position might be checked, but none of the other important assessments and measurements.   

Beyond accessing necessary tests, appropriate interpretation of results are also a vital part of sound care. Even if a midwife is able to arrange her lab work at U of M, or a client to pay for an ultrasound out of pocket, they are then left to interpret the results themselves, often without any training to do so.  It's difficult to detect risk factors if you don't have access to proper assessments, or the knowledge base to interpret them properly.  One of the biggest differences between home birth and hospitals is that the medical practices have mechanisms for providing further follow-up testing and care, where midwives do not.

3) The third issue is the way midwives go about treating abnormalities with home remedies instead of referring clients for proper medical care.  
  
The third challenge regarding assessment for out of hospital midwives (beyond philosophy, accessibility, detection, and interpretation) is the appropriate treatment of those issues that are detected along the way.  A common example is the way many midwives go about "treating" Group B Strep.  Most do not do IVs, which is the research-based, and most effective Group B Strep treatment, because they don't want to get caught practicing medicine.   Instead, midwives are presenting women with research supporting Hibiclens or suggesting they put garlic in their vaginas, rather than referring them for medical care.  Proper assessment of babies born to mothers with Group B Strep is also vital, and can be life saving.

Language to Worry About (aka Red Flags) 

• If your midwife "offers" the above-mentioned tests/screenings but subtly encourages "declining" of those tests 
•  If your midwife "offers" tests, but tells you that all/most of the other clients refuse that test/treatment
• If your midwife suggests home remedies to treat an issue (ex: putting garlic in your vagina instead of getting IV antibiotics for Group B Strep)  
• If your midwife doesn't have any mechanism to provide follow-up tests/procedures for abnormal tests/screenings (scheduling, collaboration)
• If your midwife does not directly facilitate referral for appropriate follow-up care when tests/screenings are abnormal or requiring further evaluation (ex: if parents are left to do this themselves)
•  If your midwife "offers" a test and simultaneously gives you an article from Midwifery Today (or any other heavily biased "resource") on that test 
• If your midwife "offers" a test/treatment and when you accept it, they don't have the material/equipment on hand to perform it. (glucola, pap smear, chlamydia/gonorrhea culture, RhoGam, Vit K) so they reschedule it for another visit. Often, these tests don't happen at the follow up visit, either.
• If your midwife drags her feet (this can be subtle) when you accept a course of care/treatment -multiple marker screening, glucose screening, RhoGam @28weeks, IV abx - until you change your mind, forget about it, or it's conveniently too late to do the test

In Conclusion:
This post was meant to do three things: 

1) Offer mothers up to date information and resources about routine assessments for prenatal care.  

2) Help mothers understand the necessity and importance of key assessments as it relates to safety.  

3) Offer a sense of what abnormal, or unsafe care might look & sound like so that any mother can readily identify when a red flag should be raised.  

Many of you have read Magnus's Story, so I won't recap here.  What I will say is that the issues we are discussing in this post are vitally important to safety.  A midwife who a) does not have the skills or access to appropriate assessment  or b) does not value assessment in her philosophical approach to birth, pose a very real breach of safety for any mother and baby.  Every loss or injury story I know, (which is far too many) could have been prevented with appropriate assessments.  Here is my personal example:

• If our midwives had appropriately screened during the prenatal period, they would have seen that we were considered high risk for many reasons.  Instead, they pretended that our 10+ pound breech presenting baby was a "variation of normal", downplaying the severity and dangers involved, and failing to acknowledge any risk at all.  
• If they had known what to look for when the ultrasound results came back at 38 weeks for a frank breech baby, they would have seen his size and nuchal cord wouldn't make us candidates for a safe vaginal breech delivery outside a hospital.  
• If our midwives would have assessed my cervix dilation progress, they would have noticed I wasn't fully dilated before I had pushed for 4 hours against myself.  
• If they had assessed time passing, they would have noted that 6 hours of pushing for a breech delivery was a "prolonged labor".  
• If they had appropriately monitored during labor, they would have found a baby in great distress who stopped breathing, but instead didn't know until he was born without a heartbeat.  

Assessment is about gathering as much information as you can, so that your care provider can work on a preventive basis to keep you and your baby as safe as possible during this journey called pregnancy and childbirth.  Any responsibly practicing midwife will value assessment, so she can appropriately monitor for low-risk circumstances, and refer you to alternate care should the need arise.  Home birth is not safe for every woman and every birth.  Midwives who claim assessments are not necessary, who do not have the educational knowledge to do the assessments necessary, or who suggest you can be treated with homemade remedies, should be an enormous red flag to the mother.  I hope any mother reading this who is questioning the care she is receiving, never hesitates to get a second opinion.  Doing so could save your baby's life.  It would have saved my baby's life. 

Resources

US National Library of Medicine: Prenatal Testing

American College of Nurse Midwives: Trimester by Trimester

Links
Routine Care During Pregnancy

Routine Care During Pregnancy

Now that the holidays have settled into a nice new year, we're back on track for talking about the serious issues families are facing with the current state of midwifery in MI.  We'll start the year with a series of posts related to assessments, testing, and their relationship to safety.  We hope you find them thoughtful, and useful.   

What do you get when a group of professionals have no practice standards?

A crap-shoot as to what kind of care a client gets. 

A group of us were discussing creating a list of routine prenatal assessments and cares that should be offered by all maternity care providers - specifically CPMs and OOH midwives. There is such a variation of practice, training and skill among these "professional" midwives that it is difficult for a client to know if she is getting appropriate care or not during her the course of her care. Former apprentices have voiced concerns numerous times about the lack of safe care they'd witnessed -and the complicated nature of the problem. A point we keep coming back to is that CPMs have no professional guidelines. There is no document or position statement by an OOH midwifery organization that lays out appropriate care (routine tests, follow up, labor assessments, timing of FHTs in labor, etc). There just are no standards. And that is the root of the problem.

But it sure seems like midwives should be breaking down the issues surrounding what constitutes appropriate care and assessment during pregnancy and birth.  You know, like writing actual professional practice guidelines. Midwives are the ones who keep asserting that they are "professionals." THEY should be sitting down together and writing these standards and disseminating this information to each and every CPM out there saying: "These are our professional standards." "This assures safe and competent care." But instead they know that CPMs do whatever the Hell they want [homeopathic streptococcus, anyone?] and they don't do anything about it except cower behind the tenet of "informed consent."

Our group advocates for professional practice standards. This means each mother who hires a CPM should be assured that she is receiving appropriate, competent and thorough care based on clear and concise professional practice guidelines.

There are a number of places one can look for a list of routine prenatal tests and screenings: 

US National Library of Medicine: Prenatal Testing

American College of Nurse Midwives: Trimester by Trimester
  
But where is the list for OOH midwives? Routine prenatal assessments? And how often is this list reviewed and revised? Which professional organization is doing this? The answer is no professional group of CPMs is doing this. And CPMs do whatever they want. Or don't want to do. 

Peruse this document:

NACPM standards of practice

Does it say anything about routine prenatal care?
Does it say anything about routine labor assessments?
Does it say anything about standard procedures for women planning an out-of-hospital birth? 
Does it say anything about use of unproven, potentially unsafe, ineffective treatment modalities such as herbs or homeopathy?
Does it say anything about safety - and which situations and circumstances enhance the safety of birth in the out-of-hospital setting? 
Does it describe the process of risk-screening?
Is it anything more than a bucket of fluff left for each and every CPM to interpret as she sees fit?

CPMs need clear practice guidelines even more than other health care professionals - because they're working on their own - and not under medical practice guidelines or hospital policies.  NACPM (or MANA) should have regularly-updated, concise, evidence-based practice guidelines for routine prenatal testing in pregnancy, postpartum and for newborns.   
**Every mother reading this should clearly understand that without these guidelines in place for assessments that protect your safety, you are at great risk under a CPM's care.