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18 months ago, I was in the midst of a 3-week-long obstructed labor. I had well over a half-dozen encounters with healthcare providers during that time.

I expressed concerns about my frequent, very strong contractions (although I didn’t meet the technical diagnosis of being “in labor” because my cervix wasn’t progressing in dilation, I knew that my uterus was becoming rock-hard every 5 minutes and could not possible contract any more strongly). I expressed concerns about my high blood pressure (although I didn’t quite meet criteria for preeclampsia or pregnancy-induced hypertension, I knew that my systolic blood pressure had increased at least 20 mmHg above my own baseline). I expressed concerns about the shape of my belly (although it’s normal for the baby to drop near the time of the due date, I knew my shape had shifted in an abnormally drastic way).

I was told, time and again: “It’s your first pregnancy, so of course you’re anxious about all of these things. You need to go home and relax.” In medicine, we like to normalize patient’s symptoms, and reassure them that they are healthy. Usually, that’s true.

In my case, the twist came after delivery. Then, I was told, “It was your first pregnancy, so of course you didn’t realize that anything was wrong.”

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As time goes on, I’ve found that while the grief over my son endures, the grief over my lost former self has largely resolved. Or, stated differently, while I’m still grieving, I’m comfortable with that fact.

Though at times I get frustrated that aspects of my social life remains complicated and difficult, I would never want to go back. I’ve gained too much, and grown too much. I still cry very frequently, I still can’t work as much as I used to. I still struggle with trigger-related anxiety and flooding, to the extent that social gatherings can quickly become unpleasant and overwhelming. I don’t think I’ll ever attend a delivery again — and not only that, but I’ll likely continue avoiding emergency and critical care as well, in a drastic change from my previous career plans.

I faced all the stages of grief in confronting my own internal changes, starting with enormous shock and denial. Then I fought, in anger and sadness, against losing my former personality and my former identities. 

Guilt was the strongest, darkest contender. Breaking down that guilt, bit by bit, provided a liberation that I never would have stumbled across without Sacha’s guidance. 

He has taught me to receive kindness and support without looking for an insinuation of weakness or incompetence. To be more compassionate, more accepting, more loving towards myself, more open to change and growth, more excited and curious about the future (even in my awareness that most events are beyond my control). I’m not perfect in those regards by any means, but I am completely changed, and I’m happy about it.

The New York Times has an ever-growing series of brief essays by parents of babies who were stillborn, and right now I especially connect with the words of Brooke Taylor-Duckworth, who writes:

For a long time, I missed my old life and my old self almost as much as I missed my daughter Eliza. I felt like my identity had been entirely subsumed by my grief.

I still miss my daughter more than words can say. But my old life? My old self? No longer so important…

I was happier before Eliza died only in the sense of being without sadness. Now I am both heartbroken and joyful: I have given birth to death and to life…. I hold a grief in my heart that makes me more human, more compassionate, more furious with the injustices, and more grateful for good fortune.

I landed on the slim side of statistics with Eliza. I am acutely aware that there is nothing that protects me or my family [and in my case, my patients] from landing there again. This understanding — of how fragile, fleeting and unpredictable life is — is my burden and my gift. I would trade it for nothing, except Eliza. I love her and miss her, and always will.

I’ve struggled to express in words how I felt with the anniversaries of the onset of Sacha’s illness (and my illness), followed by Sacha’s birth and death. The truth is that the anniversaries felt so much worse than the actual events. This year, I lived through those dates – for the first time – with the knowledge that death is enormous and endless, and with the perspective of hindsight to reveal errors that were made in my and Sacha’s care. I lived through those dates without the barriers of confidence, innocence and shock. Without holding my baby in my belly or in my arms.

The anniversaries were brutal – even more so than I had imagined – and I’m so thankful to friends and family who reached out to me on those days and shared remembrances of Sacha’s life in beautiful ways. This post from Eddie’s mom closely reflects my experience of time as it relates to grief. The pain hasn’t actually lessened (though I have grown and strengthened in ways that allow me to bear it more easily).

Another mother recently posted on the approaching anniversaries related to her stillborn son, several years after his birth. She wonders if she could have saved him, inevitably, as she wonders every year. Then she concludes that, truth be told, since his death she has lived every day trying to save him in some way – every single day.

I do the same. Every day.

life after eddie

A dear friend of mine shared an article with me recently about the concept of time when faced with the inevitability of death. Tragically the author had been diagnosed with cancer and died just a few weeks after the article was printed.

Beautifully written and poignant, it struck a chord on how Chris and I view time since we lost Eddie.

Time is the strangest concept in grief. Time used to mean so many things: planning our future or reminicising about our past, time away to have a break, time to ourselves, time for other people, time for a change, give it time, haven’t got the time. And so on…

Time, in its essence, indefinitely moves us forward. As we approach Eddie’s first anniversary, society and some religions dictate that the year of grieving is over. It’s time to get on with our lives.

We feel far away from these…

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just like Joaquin Phoenix (without a beard).

I’m doing some intense and exhausting soul-searching, thanks to Sacha who, from day one, gave me the clarity and motivation to try to make things better (not just in the outside world, which I had always focused on before, but in my own life).

It’s not an easy path, and not what I would have chosen for myself – not in a million years. But it’s the path I entered the moment I found out I was pregnant, so I’ll stay on it gladly. I’ve learned that what’s best for my son (or , now, what would have been best for him) is also what’s best for me in the end… Even if it’s not easy or convenient.

I have a lot of friends and readers in the medical community so I want to share this…

One of the key points that I’ve found from my own experience and from looking through the literature about how pregnancy loss and infant death are handled, is that providers (and well-meaning others) have an instinct to rapidly say “Don’t worry, you can have another”. The message they’re trying to convey is “There’s nothing wrong with you, this wasn’t your fault”. They are trying to be reassuring and provide hope.

But the message a bereaved parent hears is “This is nothing to be upset about, your pregnancy/infant/child wasn’t that important anyhow, the precious creature most important to you in the entire universe doesn’t even matter at all”. This message is wounding and bewildering. When it comes to parental bereavement, the age of a child is completely irrelevant.

In due time, it is necessary to address any impact on future reproductive health. But a reflexive “you can have another” is woefully unempathetic and inadequate.

Expecting the Unexpected

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

“I think they didn’t tell me anything because they had…

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After my tragic experience of pregnancy and childbirth, I often think about how ridiculous the whole concept is. Why do we make babies from scratch, inside our bodies, the way that we do? It is extremely dangerous, especially for human beings, given all our pelvis/head issues. From a biologic standpoint, it’s not a good “strategy”. It doesn’t make much sense. Throughout human history, our babies have been dying, and killing us, and otherwise upending out lives and our families, in ways that wouldn’t happen if we could reproduce in a more sensible manner. Like birds do. (Although, my brother has kindly pointed out that sometimes even turtles need c-sections.)

Why mammals, why pregnancy? The answer is in the news, and it has nothing to do with talking to snakes or sampling forbidden fruit. It’s transposition of parasitic genomic elements containing progesterone binding sites. Thanks, jumping progesterone-activated nucleic acid sequence, for stumbling into positions that warped progesterone-producing, egg-having bodies into sometime homes for tiny living creatures. Thanks a lot.

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This is part of my scar. This is where my Cesarean incision was extended, because the doctor had a hard time getting Sacha out. Because his brain tumor went undiagnosed (due to an error in judgment) and grew so large. I’ve been working extremely hard over the past week (okay, over the past *year*, but especially over the past week) to untangle my extremely complicated thoughts and feelings about this.

I’m working on accepting the truth that Sacha and I deserved better, and we could have been better helped and protected (physically, emotionally and spiritually). I am not an angry person; in any given situation, I’m most likely to be understanding and quick to forgive. But I need to acknowledge that human mistakes were made. Because the alternative is to feel like I’m living in a horrifying world where my child is not cared for and my dignity is not valued.

This work is not easy and it is not fun. It’s lonely and scary and exhausting and humiliating and awful. But I’m doing my best to continue facing it, to continue making progress. Because at this point that’s what I need to do in order to keep being a good mom to Sacha, a mom that can keep the beautiful memory of his spirit alive in love and dignity.

Hugo’s mom wrote today about her fear of hearing someone call his name out to a child who would have been Hugo’s age.

This poem captures that anticipated feeling of disorientation and heart-sink.

Stillbirth
Laure-Anne Bosselaar

On a platform, I heard someone call out your name:
No, Laetitia, no.
It wasn’t my train–the doors were closing,
but I rushed in, searching for your face.

But no Laetitia. No.
No one in that car could have been you,
but I rushed in, searching for your face:
no longer an infant. A woman now, blond, thirty-two.

No one in that car could have been you.
Laetitia-Marie was the name I had chosen.
No longer an infant. A woman now, blond, thirty-two:
I sometimes go months without remembering you.

Laetitia-Marie was the name I had chosen:
I was told not to look. Not to get attached–
I sometimes go months without remembering you.
Some griefs bless us that way, not asking much space.

I was told not to look. Not to get attached.
It wasn’t my train–the doors were closing.
Some griefs bless us that way, not asking much space.
On a platform, I heard someone calling your name.

To me, this poem is also a reminder of all that I’ve learned (and all that Western society is slowly slowly learning) about the importance of validating and mourning different types of loss. In my reading, the repetitive bewilderment beautifully evokes the overwhelming nature of “stuck” traumatic memory, unprocessed and unintegrated even 32 years on, thanks to a stark lack of recognition and support. Any parent will mourn their child for the rest of their life, 32 years and longer. But that homeless confusion – that’s something that doesn’t need to persist, and that time alone will not heal.

It takes an enormous amount of work, and an enormous amount of support, to process and integrate something so unthinkable and unspeakable. Her grief was not given much space, and she didn’t ask for it to have more space. In my mind and based on my experience, that doesn’t mean she didn’t need it.

I was kind before, too; I didn’t need a tragic experience to become kind. I’ve valued kindness and practiced showing it to others, growing in this practice slowly with time – beginning, perhaps, in first grade, when my class watched a devastating interpretation of Ray Bradbury’s All Summer In A Day, and advancing a bit in different relationships and different roles. I’m not always perfectly kind, of course, and I judge myself pretty harshly when I feel I’ve messed up (and now, I’m distressed to find that occasionally I’m physically unable to show kindness in the way I would like – Broca’s area actually shuts down during triggered moments and flashbacks). But I never quite understood just how important kindness was to those who are suffering. Now I’m learning.

“It is only kindness that makes sense anymore, only kindness that ties your shoes…”

Kindness

Naomi Shihab Nye

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

Lately, it’s been striking to me when people say “that seems like a lifetime ago” or “it feels like it’s been a lifetime”.

The lifetime that I most care about was only about 36 hours long (and, really, only about 3-4 hours before brain death from blood loss probably occurred). So many lifetimes end before birth even occurs – but unless you’ve loved a person who died so young, it’s easy to forget about that.

“A lifetime” feels like a strange and flimsy measure of time.