During pregnancy: Informed consent starts with information

• Inform & Educate—Inform all patients stillbirth is a possibility. Use matter-of-fact statements and real statistics. Talk about stillbirth the same way you talk about Shaken Baby Syndrome and SIDS
  • If a pregnant patient wishes to discuss risk with you, do so honestly, in as much detail as they desire. Do not dismiss their concerns; you will only send them to Dr. Google
  • If a patient is at particular risk for stillbirth or other difficult outcome, ensure they understand what that means. Do not reassure them that “everything will be fine”, especially when higher risk exists. DO discuss specific risks, & actions they can take to be on guard and/or mitigate them
• Informed Consent—If a patient chooses to continue a pregnancy post-term, or to refuse a procedure that could increase risk of stillbirth, ensure they are aware of the numerical and specific risk; inform with hard numbers, and without fear
• Movements Matter—Educate your patients about the importance of kick counts. Read up on recent changes in Australia and the UK regarding tracking each baby’s individual pattern of movement instead of arbitrary numbers. Emphasize that each pregnancy is unique and should not be compared to other pregnancies, even for the same woman
• Eliminate Myths—Ensure your patients understand that babies never run out of room in the womb; movements change in type, but not in frequency
• Dangers of Dopplers—Talk to your patients about not relying on home dopplers for reassurance. Discourage patients from purchasing or using home dopplers
• Warning signs—Educate your patients on warning signs of stillbirth: marked decrease or increase in movements; any period of especially intense activity outside of the norm for that pregnancy; intense itching, particularly on but not limited to the hands and feet; sharp pain in upper right quadrant/under ribs; intense headache; swelling, especially intense swelling of hands and/or face
• Be available—Encourage patients to call you and/or go to L&D anytime they feel something could be wrong, even if they come in daily. Let them know they are never a bother

For the hospital/birthing center:

• Resources—Make contact with all local organizations providing memory or comfort boxes. Ensure all personnel are aware of the location of these boxes, and how to request more
• Cuddle Cot—If you have a cuddle cot, ensure all personnel are aware of its location and how to use. If you do not have a cuddle cot, consider requesting or holding a fundraiser to purchase one
• Training—Ensure all staff members are trained on appropriate procedures for stillbirth or perinatal loss
• Limited Personnel—Whenever possible, minimize the number of staff members who work with a bereaved family. This allows parents to become comfortable with providers and not have to explain or answer questions multiple times

If a stillbirth should occur:

• Be empathetic—Understand this is a traumatic & confusing time in your patient’s life, possibly/ probably their worst moment ever. Be prepared to speak slowly, proceed slowly, and repeat things if necessary. Whenever medically possible, give the patient time to process before pushing any procedures
• Ask for and refer to the child(ren) by name
• Provide Information—Inform your patient and/or their support person of all medical options. Discuss methods of induction and availability of a C-section if desired
• Follow Birth Preferences—To the extent medically possible, allow the birth parent to follow the original birth plan, and/or ascertain their current wishes for the birth. Do not assume the birth parent wants a fully medicated or “easy” birth, and if you offer anxiety medication, ensure the birth parent is aware of the effects it will have on memory
• Options for Memories & Memorabilia—Ensure patients are aware of all options to preserve memories and memorabilia, to include: Now I Lay Me Down to Sleep / other forms of birth photography; hand and footprints; hand and foot imprints; locks of hair; preservation of breast milk through breast milk jewelry; hospital memory boxes; any other items as appropriate
  • Bathing/Dressing—Offer parents the option to hold, bathe, and dress baby, and the option to leave the child dressed upon departure from the hospital. Should they choose this option, ensure they receive these clothes at a later date
  • Religious Observances—Offer the ability to observe any personal religious ceremonies such as baptism or blessing
  • Time—Allow/encourage parents to spend as much time as they wish with the child(ren), and do not pressure them to leave before they are ready. If available, offer the use of a cuddle cot in the hospital and/or at home. Ensure parents are aware they can also visit at the funeral home
  • Physical Items—Keep or offer to keep all physical mementos possible: measuring tapes, blankets, ankle bracelets, etc. Keep even & especially if stained with the child’s blood
  • Discuss Options for Breastmilk—Ensure the birthing parent is informed of the choice to either stop breastmilk or to express and donate it. Do not assume every patient wants to stop their milk

After discharge:

• Follow up—Follow up with the patient regularly. If possible, schedule a check-up within the first few days of discharge. Offer to and attend the funeral
• Be available—Be available to meet with your patient as often as they need it
• Listen—If your patient wants to talk to you about their feelings, listen. You are the face they are most familiar with, and they may want to talk to you before seeing a counselor, therapist, or support group
• Offer Additional Support—Referral to an MFM, discussion of autopsy results, referral to a grief therapist or support group, other medical services as appropriate. Understand many patients will not be ready to utilize these services in the beginning; offer again in a few weeks and/or months

In general:

• Understanding—Understand what it’s like to experience a stillbirth or perinatal loss, both physically & emotionally. If you don’t have personal experience, read books/blogs, or speak with bereaved parents
• Be a resource—Be aware of support groups and resources for bereaved parents in your area
  Support the whole family—Ensure the father/second parent/other family members also receive support
• Use plain language—“Stillbirth” is not a dirty word. Use plain words like “stillbirth” and “death”
• Use caution:
  • With religion—Do not assume religious beliefs or discuss religious concepts unless the parent(s) have done so first. This includes use of the word “angel” when referring to the deceased child. If you follow a personal faith, request permission before praying/offering to pray
  • With concepts like guilt, fault, and blame—While some patients will want to be told the death is not their fault, others will feel alienated by those words. Allow the patient to steer the conversation in this area
  • When talking about subsequent children—Some parents will want to discuss this right away, but some will not. Avoid phrases like “try again”; instead, say “try for a second/another child”. Similarly, avoid terms like “rainbow baby” unless the parent(s) have used it first
  • When dealing with an “early” loss—Regardless of the legal definition of miscarriage vs. stillbirth, ensure all bereaved parents are supported in every way they need. All parents should be offered support and the option for memorabilia, to include photos, and all parents should be able to select a means of disposition for their child’s remains

***Regardless of past experience and everything written here, each individual case is specific
and unique. Where conflict exists between these instructions and patient desires, always allow the
patient freedom to choose. They will be your guide in providing the care they need***

~
A PDF version of this post is available here: Requests of a Bereaved Mother for Prenatal Providers.

One of the things I hear most often when I share any part of Adrian’s story is that stillbirth is “rare”. And I understand this. If I had heard that something happened in less than 1% of all cases, I might have considered it rare, too…Until it happened to me.

I think the problem with using words like “rare” in place of actual numbers is that it’s a description that renders those numbers abstract. Our brains are so unused to thinking about statistical concepts that we classify these things as either likely, e.g. I’m likely to have a flat tire at some point in my life; or practically impossible, e.g. I will never win the lottery. But we do a really poor job of thinking about all of the possibilities that lie in between.

If I told you that something happened 1 out of 160 times, would you consider that rare? What if I put it in context? What if, for example, every time you crossed the street, you were subject to a 1 in 160 chance of being hit by a bus? Or in more positive terms, let’s argue that one in 160 lottery scratchers yields $100 (These things are obviously not true, this is just a “for instance”). Do these numbers start to have more meaning now? Do you find yourself giving them different labels? If you heard that someone was hit by a bus while crossing the street, would you now think of it as something tragic, and also less surprising? And if the person who was hit by a bus was your friend or loved one, would you maybe start advocating for safeguards and education in order to keep similar tragedies from happening again?

This is one of the things that frustrates me when I talk about stillbirth outside of the baby loss community. Because the statistics are very real, and yet they are commonly dismissed. People use words like “rare” to distance themselves or to quiet a pregnant mother’s concerns, implying that stillbirth is something that never happens, or if it does, it’s more like one in a million.

I understand a lot of this is prompted by fear. Pregnancy is a scary time, and it feels like so much is outside of our control. I think there is also this unconscious assumption that stillbirth just happens, and that there is nothing we can do. (This is wrong.) And even if it weren’t, this kind of attitude would only keeps us from developing better prevention and solutions.

Simple fact: in the United States today, 1 out of 160 pregnancies ends in the death of the child at or after 20 weeks gestation. 1 in 160. If we were talking about something meaningless, I could maybe understand the use of words like “rare”. But this isn’t meaningless. This is important. This is a sad, and in many cases, preventable, emergency.

So please use caution when thinking about statistics. 1% is quite a lot when you’re talking about the death of a child. You may consider it “rare,” but it’s really a matter of perspective. And from where I’m sitting, 1 in 160 is one too many.

~

This title was originally used for an earlier blog post: Stillbirth & Statistics (Old Version)

Related:
Miranda’s Blog: Requests of a Bereaved Mother for Prenatal Providers

Full moon (Miranda Hernandez)It’s a little after midnight, and Charlie wakes me with the sharp grip of his teeth. He hasn’t been sleeping well, and he often needs to go outside to pee. It brings me back to his puppy days, though I guess he is still a puppy, even now. We went to the vet last week. I thought he might have a UTI, but the vet called yesterday to say he had crystals in his urine. We’re going back for more testing. Hopefully, he just needs to change brands of food. I love this dog so much, I would do anything to keep him healthy and happy. He fills my heart with every piece of his toothy, shoe stealing ways. He is the very definition of love.

And every so often, when I’m snuggling Charles, I think of my son, and how things ought to be. It’s April now, and two Aprils ago I was hugely pregnant. I didn’t know it yet, but I was having a little boy. And he was active and growing, and I was full of so much happiness. And then everything changed. It’s still hard to think about change.

My son, Adrian James, should be 22 months as I’m speaking. I watch his compatriots; see their pictures; think about what it means that he’s gone–he’s not running around, chasing the dog, sparking trouble and love in equal measures. He’s not eating and talking and finding new ways to fill my heart with joy. He’s not here.

And I’ve tried to explain this before, but I get the feeling most don’t understand it. Because I’m adamant there is no way to replace this person who missed so much of his life. And yet I’m still living; I’m pregnant again, and my daughter brings me her own kind of joy. And I find happiness in her bouts of activity, and happiness in my troublemaking pup. Because I needed them both, not as a replacement, but as a promise that life is worth more than just pain. I needed them both, and I needed to love them, and my heart just gets bigger. This is real. This is love.

Think of something people do everyday. Crossing the street, for example. On the surface, fairly mundane. Some small danger (make sure you look both ways) but generally not any cause for concern.

Now imagine one day you were crossing the street, and you were hit by a bus. No warning, no notice; you were completely unprepared. This is obviously something that’s possible, but not the kind of thing that happens everyday. Not to most people. But now that it’s happened to you, you are wary. You are no longer able to cross the street without fear. Other people do it, and you can see that it’s safe, but for you, you are always going to hold on to that memory. And no matter how much time, and how much therapy, you’re always going to be a little bit afraid. You’re always going to be a bit more aware that something like that can happen to you; to your friend; to anyone in the world at any time, on any random Thursday morning.

Now imagine there’s something you want on the other side of that street, something priceless and beautiful that will bring you much Joy. This thing is unique, created just for you, and it exists only for a limited time.

The first time you tried to cross the street, you were on your way to that Joy. You had anticipated it, gotten your home and family all prepared. But then you got hit by the bus, and it disappeared. That particular piece of Joy is now gone; it will never be available again. And some people, who may not understand, will tell you that Joy is always there, and you just have to cross the street again. But you know better. The Joy you lost is irreplaceable.

And someday, you may try to cross that street again anyway. You aren’t looking for a replacement Joy, but you are ready for an additional Joy to accompany the Pain. And as you take the first steps into that street again, you realize you are terrified. And you are surrounded, again, by people who don’t understand. People who step so blindly around the crosswalk, as if buses never existed.

But you know better. You know the importance of the lines of the crosswalk and staying inside. You know about looking both ways, not just once, but throughout the journey. You know about paying attention when cars honk, or the lights change. You know that buses frequently come up out of nowhere and take us all by surprise.

And some people, even those who know, still don’t understand why you have so much trouble with this journey. “It was a one-time thing,” they say. “The traffic conductor will protect us.” But you see the traffic conductor; you watch him ignoring important signs, and you remember the first time you tried to cross the street, and he told you, “Don’t worry–everything is fine.” And you see him now as he tells other people that buses don’t exist, but you know better. And you know you can’t cross the street based on a lie.

So you take this journey, eyes wide open, and you accept that it is terrifying. And you look both ways, and you take all the precautions, and you maybe trust, but if so, you also verify. And you keep your eye on Joy, and it feels like both the longest and also the shortest journey of your life, and it feels like you alone know that none of it is guaranteed.

~

This is what it’s like to think of pregnancy after loss. This is what it’s like to hold your child inside, and wonder if this will be the day that he or she will die. It’s a nightmare. It’s terrifying. And if you want living children, it’s part of your life.

Related:
Miranda’s Blog: 1 January 2019
Miranda’s Blog: Why Getting Pregnant Easily Isn’t a Gift
Miranda’s Blog: 13 June 2019 (needs to be posted)

I have always considered myself a part of the natural community. When I became pregnant the first time, I wanted to keep everything natural as much as possible. I reasoned that if women had been giving birth for millennia, it only made sense that we already had everything we needed. This was a large part of why I started reading your site.

I learned a lot from you. I read the traditional books, but I found more comfort in how you explained things. I loved watching the weekly updates from your last pregnancy. I found commonality in so much of what you felt and said. I trusted you.

And this is why I’m writing now. Because I trusted you, and you let me down. You talked about so many things that could happen during pregnancy, but you never talked about death. And when I allowed my pregnancy to go overdue, I never thought it was something that could happen to me.

My son died on the morning on our 41st week of pregnancy. And what I felt first and most strongly was shock. How could this happen? How was it possible that I did everything right and naturally and I still lost him? Why didn’t anyone let me know?

I don’t blame you individually. Like I said, I read the books, and they were equally evasive. My providers never mentioned it either. No one talks about stillbirth, and I think that’s wrong. I constantly wonder, if we changed this conversation, how many babies could have otherwise been saved?

My son died almost two years ago. It’s taken me a while to be able to return to sites like yours. I see you spoken of so positively, and I am happy to see you have chosen to discuss stillbirth recently. I am asking you to continue. This is a knowledge we all have a right to know. This is something that could save future lives.

I used to think nature was everything. I used to think if I maintained positivity, nothing could truly hurt me. I focused so hard on those women who have been birthing babies for millennia that I neglected to realize that over those millennia, so many of those babies died. My baby died. I don’t want to see this happen to anyone else.

Related:
Miranda’s Blog: Nature Isn’t Perfect
Miranda’s Blog: A Letter to the Woman who Wants the “Perfect Birth”
Miranda’s Blog: Stillbirth & Statistics; What Does it Mean to be “Rare”?

Statistics are varied, but most agree–at my age, the chances of pregnancy via IUI are believed to be between 10-20% each month. If I was with a partner, the chances could be as high as 38%, but greatly dependent upon factors such as age and medical condition. In any case, conception isn’t guaranteed. And somehow, in this slew of numbers, I am one of the “lucky ones”.

At the age of 34, I got pregnant on my very first try. I underwent a single, unmedicated IUI. It was almost as natural as intercourse. And two weeks later, I saw a second blue line, and my world changed.

Before I tried, I had been speaking with a group of other women who wanted to have children. They were single like me, but a few years older. (I was still pretty young in comparison to the bulk of the SMC crowd.) They had also been trying for several months. So when I found out I was pregnant, I was a little worried to tell them about it. Would they resent me? Would I be difficult to be around? It almost didn’t seem fair that my miracle happened so easily.

And then my son died.

I had had a relatively easy pregnancy. There were some warning signs towards the end, but I didn’t know they were serious, and my providers didn’t seem concerned. And on the morning of my 41st week of pregnancy, the day before I was supposed to talk to my providers about being induced, I went in for a routine appointment and was told my son had no heartbeat. And suddenly, my life didn’t feel like a miracle any longer.

Nine months later, I was 36, and I finally felt ready to try for a second child. I was surrounded by other women also trying to get pregnant, and many of them were having trouble. Sometimes, it really can just take time. But time is painful when you are missing your last child. And because I was almost two years older, I had no idea if pregnancy would happen again so easily for me. And so I wasn’t surprised that it didn’t happen on my first try, but then it did on my second.

Statistics are funny. I really wish someone would do a study on the chances for real, taking into account the multiple factors that contribute to fertility. I still don’t know if I’m an anomaly, or if I just got lucky. I don’t feel lucky.

After I got my positive test, I told a few friends. Most of them, also in the loss community, had been trying for months at that point, and I can understand why my news was difficult to hear. I honestly don’t know how I would have reacted in their position. Sometimes life is just hard. But now I feel isolated from those I want and need the most. And there’s really no good solution. I don’t want to bring them more pain.

So I’m pregnant now, just into my third trimester, and I’m terrified and ecstatic all at the same time. And I’m lonely, and I have so many emotions for those who can’t be with me now. And I wish there was an easy button, some way that this made sense. Because for one of the “luckiest” women in the lottery of fertility, I am also one of the loneliest. And sometimes, I think maybe I’d rather be damned.

I’ve been feeling funny all day. I can’t really put a name to it. Off-balance, yes, and a little bit sad. I’m still processing pieces of my last relationship.

A friend sent me a photo from a year ago, and I almost cried. I look so different in it; I almost didn’t recognize me. But I’m pretty much always near tears. That doesn’t change.

I was sitting in class today, and I noticed the bottom of my stomach was itchy. A weekend ago, I started feeling pain underneath my right side ribs. These are both potential symptoms. There could be something wrong with this pregnancy. And it all feels so unfair, and I’m realizing I am terrified. I can’t handle losing this baby. And now come the tears.

A year ago, life felt simpler. Even having lost my son, I was focused then. I was comfortable in my pain. I was taking care of my body and getting ready to try for a second child, and I was feeling pretty good, all things considering. I miss that simplicity.

Six weeks from now, it will have been one year since I started classes. Six weeks from now, it will have been one year since I first met Liam*. And those two things, together — I’m realizing that was a lot for me. And life got so quickly heavy. And I’m still learning how to swim.

And this little girl inside me, she kicks and I am full of feeling. Everyday I love her more, and every day, I’m scared. She’s helpless, and I’m responsible for her. And I’m helpless, too, just with more knowledge.

I called my doctor this morning, and he sent me for another lab test. It turns out the one that’s needed isn’t standard. The results will take a week to come back, and I don’t know if I’m hoping for them to be negative or for an answer. I just want my little girl to be okay. And for now, I’m living in this slowest kind of panic.

~
* Names have been changed to protect privacy

Related:
Miranda’s Story: Problems in My Pregnancy?
Miranda’s Blog:Pregnancy After Loss: A Parable
Miranda’s Blog: 13 June 2019 (needs to be posted)

This post was previously published under the title, “Stillbirth & Statistics: What Does it Mean to be “Rare”?” That title was re-used for a more recent post.

~

After my son died, one of the things that haunted me most was that I didn’t know previously that stillbirth was a realistic possibility. I had seen exactly one instance of stillbirth depicted on TV (Spoiler alert: “The Secret Life of an American Teen”), and the way it was presented led me to believe it was something that happened to one in a million, not one in 160.

1 in 160. That’s the rate of stillbirth in America today. Other countries may be higher or lower, but most hover around similar points. 1 in 160. Less than 1%. Sometimes called “rare.” It’s interesting how we define “rare.”

When I was first thinking about having a child, one of my close friends told me about miscarriage. This was before the days when the “1 in 4” statistic was commonly known. In a very gentle way, she told me that miscarriage was pretty common, and that it may happen to me when I was ready to try. She prepared me mentally for the possibility that my future pregnancy might not succeed at first try.

I don’t know how most people feel about that knowledge. I was thankful. I was glad to know the dangers, even while hoping for the best. And when my first pregnancy passed the “safe point” at 12 weeks, I felt relieved. The scary part was over. The only danger I had known was gone.

And I think this is where the community failed me. Because I did all the reading. I joined all the groups. I spent my pregnancy buried in knowledge about breastfeeding and co-sleeping and the best ways to counter fatigue, but no one ever spoke to me about the real risks; the ones we keep locked in a secret closet where knowledge is painful, and just too scary.

Because the truth is that sometimes babies die. We’re familiar with miscarriage. We talk about SIDS. Why don’t we talk about other types of death?

1 in 160. One out of every 160 pregnancies in the United States ends in the death of the child at or after the 20th week. Less than 1%. It’s called rare — uncommon; seldom occurring — But I read the stories. I hear all of you. And as the mother of one of those “1’s,” I don’t consider it rare.

I see a lot of people in the loss community talk about god. They believe he has a plan for us, that things in our lives have happened for a reason. I can’t speak to these things. I don’t think any of us can claim to truly know for certain. I can say that this is not what I believe.

I’ve been a non-believer for most of my life. I don’t think the reasons matter here; they aren’t up for debate. But I wanted to ask a favor, because I’ve always believed in respect–when you meet someone in loss, would you please not assume they believe as you do?

My son is dead. It’s a fact; I accept it. His body lies in ashes, some I wear around my neck. I don’t know where his soul has gone. I don’t know if he lingers. And I’m telling you — that’s okay. I’m comfortable with that ambiguity. Please don’t tell me you know he’s in heaven. Please don’t tell me he’s watching over me.

I am pregnant now. That’s a fact. Just as with my son, it happened via medicine. I’m having a little girl, and I’m excited to meet her. But I don’t believe her brother picked her out for me. I don’t believe he’s watching over her. I only know she exists. And that is beautiful, and that is enough for me.

I am grieving now. I am grieving always. I am holding to my daughter while I ever miss my son. I don’t find any meaning in the pain that still surrounds me. I don’t think that god’s testing me. I don’t see this as his love. Please don’t tell me I will understand eventually. There is no understanding. There is only what is real.

One day, someday, I will die. I don’t know what will happen then, and that’s okay with me. I don’t need confirmation or thoughts of reunification. I don’t want to be told my son waits for me in the afterlife. Please don’t push your beliefs on me. Please don’t tell me what you can’t possibly know. These words feel like empty promises. They feel like convenient lies.

I understand you may feel differently. I know from experience I’m often alone. I’m not asking you to change your beliefs. I’m asking you not to try to change mine.

I’m grieving without god. I’m grieving, and that’s okay. I’m grieving, and I’m holding onto life, and this is what I choose. It’s enough for me.

Related:
Miranda’s Story: Spiritual Feelings
Miranda’s Blog: Quora: Perspective of a Non-Believer Following the Death of a Child
Write Your Grief: Akhilandeshvari

I have a tattoo at the top of my right rib cage. When I was pregnant with my son, this was his favorite place to poke me. It started with his bottom; I would feel this hard, round pressure. I pushed back sometimes. It felt like a game. Towards the end of my pregnancy, he flipped over entirely. I was awake when it happened; it felt so strange. After that, he started kicking me, still in his favorite spot. Sometimes it felt as if he was stretching out his entire length, head in my stomach and feet in my ribs. He was so active. He was is so loved.

After he died, I felt phantom movements for a while, often in that same place. It was like my body still remembered, still held onto him inside me. I decided to acknowledge it. I had his footprints tattooed on my ribs. I used a special ink that incorporated his ashes. It was his special place. He is under my skin, now, forever.

I am pregnant now, for the second time. Twenty-three weeks, and she is so active. I feel her movements, almost like dancing, and every day I fall deeper in love. And then today, and it feels like she is punching me. I put my hand to my stomach, and I feel her under my palm. And she is pushing on the spot that Adrian loved so much.

I don’t know if this is “normal”. As a second-time mom, I feel like I still don’t know anything. Do all babies find this place underneath the right side ribs? Do all babies dance and sway, and make me fall in love? Because I love her; because I love them both. I carry them both in my heart. And for this moment; for these nine months, they both also live under my skin.