faith, grief, Infant loss, love in loss, Miscarriage, Trauma

Three Aspects of Infant Loss We Don’t Talk About (But Should)

Here I am again, approaching spring and all its painful triggers. Two years ago I was pregnant with my little Elliot. I was brimming to my eyeballs in hope and relief as I fully believed I was past the worst of my pregnancy and, at 18 weeks, in the “safe zone.” How could I ever have conceived that the bleeding I’d experienced all pregnancy had so weakened my amniotic sac? That my water would break at only 20 weeks? That I’d be on bedrest for nine weeks, seven of those in this hospital? That the lack of amniotic fluid would make it impossible for Elliot’s little lungs develop? That he’d be born alive, stabilize, and show many appearances of thriving despite his small lungs? That he’d die in my arms at five days old, to the shock of everyone who had been optimistic about his life? How could a mother ever let herself imagine such things? Two years ago, all I knew is I loved my son and I wanted a lifetime with him. I still love my son and want a lifetime with him, but now I live in the reality of a lifetime without him.

I miss Elliot. I just saw a picture of his hair. He had a full head of thick, dark, soft hair! What mother doesn’t get to stroke her child’s hair? Watch it grow? Bury her face in it? I can never touch his hair! That might seem like a small thing, but it’s an example of what we who grieve a child go through. Every little aspect of my child, things I take for granted with my living children, are magnified by loss. It seems like the whole of humanity should understand this.

And yet, in the almost two years without Elliot, I’ve experienced and observed some challenging truths about infant loss. These are things that are hard to talk about because they’re controversial or uncomfortable or might hurt the hearts of people already hurting. Maybe I’m in a stage of realism in my grief, because I want to be able to talk about these things even as I’m angry these statements may actually be true. If these ideas are true and they shouldn’t be, then perhaps by my stating them, some reader will become aware and change his or her own thinking. But my deepest hope is always that another loss mama will feel validated in the thoughts she’s thinking and the feelings she’s carrying.

I don’t believe these things are always true for all people everywhere. But I’ve talked to enough grieving mamas over these two years to know there are strong threads of truth in what I’m saying. Many may disagree, and that’s fine. This is how it feels for myself, but more importantly to many dozens of infant loss moms in my circle. Feelings are not reality, but feelings are most definitely real. So here goes: three aspects of infant loss no one really talks about.

1) A culture of abortion cannot really feel sorry for the loss of my baby.

In the same night, the world around me can light candles on Infant Loss Awareness Day, yet clamor for more rights for “women’s health.” I’m not trying to get into the politics of abortion. The value of a child’s life shouldn’t even have a place in the political scene, in my opinion. There are many groups and individuals who care deeply about the value of unborn life, of course, but these people are the minority. I recently read an article that stated abortion was the leading cause of death in 2018; 42 million children worldwide were killed by abortion last year. I call this a culture of abortion, yes, because it is clearly practiced, accepted, and even defended (and in the most disturbing examples, celebrated!). The world around me cannot simultaneously claim to care about a baby like Elliot, while fighting for the right to end the lives of other babies just like him. So I have to accept that the wider culture around me, the abortion culture, truly does not care about infant loss. They might care about my mental health as an adult, or my reproductive health as a woman, but they do not care about the babies who die from miscarriage, stillbirth, or neonatal death.

This disconnect in our culture is devastating to my heart, and it is one reason I believe there is such a lack of medical care, knowledge, and research into conditions which affect babies in utero. The two conditions that led to Elliot’s death, Subchorionic Hematoma (which also caused my two miscarriages) and Preterm Premature Rupture of Membranes, are two such examples. When I was pregnant and enduring these conditions, and in the almost two years since, whenever I would try to get answers about why these conditions happen in the first place and what could be done to treat or prevent them, I was met with shrugs of indifference and conflicting opinions. No one really knows. No one is really researching. No one is trying to help (at least, that’s how it feels). And yet, I’m part of a large support group for parents whose babies died of these very same things. Why are more medical professionals in the prenatal field not trying to do something about this? Honestly, this is a big part of why my husband and I can’t/won’t have any more biological children: I have no advocate to walk with me through my medical issues in order to lead to hope for a positive outcome. And that really sucks. But why should a doctor or other practitioner try desperately to save unborn babies in a culture where 3,000 babies (in the U.S. alone!) just like Elliot are routinely aborted every day? Do you see the correlation? You CANNOT have it both ways. If you find yourself allowing for exception after exception of why a little baby’s life can be ended and find it justifiable, you contribute to this cultural indifference toward unborn children. And indifference toward unborn children, I believe, contributed to my son’s death. Maybe that is just the grief-soaked leap of a bereaved mother, but I don’t believe it’s a crazy one.

When I was in the hospital with Elliot the first time at 21 weeks, and they tested me and confirmed my water had broken, the doctor there at the time mentioned “terminating” the pregnancy. And yet, a few minutes later, he talked to me about the gestational age at which the NICU would be able to take Elliot and perform interventions to save his life. That age? 23 weeks. In the same breath, this doctor was telling me that today they would end Elliot’s life if I said so, but in two weeks they’d do everything they could to save it. Now, there are major risks and complications that can arise from pPROM, and I personally know women who had to be induced prior to their baby being viable because of infection or other life-threatening situations. I’m not judging any mom’s impossible choices or decisions. But I’m looking at what that doctor and the medical community and wider culture at large is saying about the value of the life of an unborn baby. You see, Elliot’s life was just as valuable at 21 weeks as it was at 23 or 25 or 27 weeks. His life was just as valuable, just as worth fighting for, the day he was conceived as it would be if he was here, a noisy toddler getting into everything. I feel like, in this culture, I am fighting an uphill battle to shout about the worth of Elliot’s and every baby’s life. Because today, 3,000 babies in our country will be treated as if their lives have no worth. But I, for one, take the lives of my babies in heaven to heart, and therefore grieve the loss of every baby who will die today. Their lives are unspeakably precious, and I wish my culture treated them that way. Because when my culture treats babies as expendable, my culture is indirectly telling me that Elliot was expendable.

2) A baby lost to miscarriage, stillbirth, or infant death is seen as a “lesser” loss than an older child.

I most definitely won’t try to argue which kinds of grief or loss are “worse” than any other. I think that’s an impossible distinction. As my trauma therapist helped my husband and me understand, every part of my history goes into how I grieve, so my grief is completely unique. Someone who’s lost an older child may experience less grief symptoms than me, while someone else who’s lost a beloved pet may experience even more. Some women who experience miscarriages do not grieve their loss as the death of a child, while many other women definitely do. I completely admit that Elliot’s death has caused a deeper level of grief than the deaths of my miscarried babies did, though my grief for Avery and Everett has played a big role in how hard I’ve grieved Elliot. We are all so different, each loss is different, and every experience we’ve ever had will play a role in how we grieve.

Yet my fellow moms living in the wake of miscarriage, stillbirth, or neonatal death often don’t feel the wide berth from people in their lives to grieve the death of their child as hard as they need to. Many bereaved parents of babies feel they are not taken seriously in the world of child loss. This is seen even in the advice to, “Have another one.” While many infant-loss parents DO want another one, imagine how asinine that advice would sound if given to someone who lost a ten-year-old. We sometimes receive messages akin to: “It was just a baby, not a real child.” I think the point I made above plays into why. Our culture has disconnected unborn/newly born babies from the precious children they will become. But if every time you look at your spunky 3-year-old or eye-rolling 14-year-old and remember that they, too, started as that little baby in your womb, perhaps you will be a part of a solution. We infant loss moms didn’t just lose our babies; we lost a LIFETIME with our child. Every day I am losing the day I should’ve had with Elliot, and with Avery, and with Everett. Would Elliot be saying “no” at this stage of his development, and climbing on things way too high for him? Would Avery Rose be into dresses like her big sister Val? EVERY day is a loss day when you lose a child. For parents who’ve lost babies, we don’t even have the memories of some of the years we had with our children to carry in our hearts. All we have is a lifetime of would-have-beens.IMG_1054

Ironically, bereaved moms who HAVE lost older children have never made me feel that my losses are lesser. Some of the deepest love and empathy I’ve received has come from mothers who’ve lost older children. They have written letters and visited and invited me to support groups and put their arms around me in solidarity. Maybe they understand, better than anyone, that a child is a child is a child. My mama heart wants MY children here with ME. And other loss moms seem to understand that so well, without distinction between levels of pain.

A dad in a support group I’ve gone to illustrated this point so well. He recounted talking to a friend whose wife was dying slowly of an incurable disease. Deeply troubled by what his friend was going through, this infant-loss dad said, “What you’re going through is so much harder.” But his friend stopped him and said, “We don’t need to do that. Everyone has their 10.” This man’s friend explained that each person’s hardest trial, a “10” on hardship on a scale of 1-10, could not be compared. For this dad, losing his precious baby was his 10. For his friend, watching his wife suffer was his 10. I can’t compare losing Elliot to someone else’s loss, whether an earlier loss or later. Having had two miscarriages prior to Elliot’s death, I have experienced the “difference” between those particular types of losing children. Elliot’s death was much more traumatic for me in many ways, but at the time, losing Avery and Everett to miscarriage was my 10. And I can’t let my imagination go to the world of wondering what it would be like to lose one of my girls, but I confess that, of course, there would be many things about losing an older child that would be “harder.”

I hope if walking through my own dark valley has taught me anything, it’s that we all need to treat each other with a lot more patience and compassion. I will try to do so, no matter what kind of suffering or joys have entered into the lives around me. If there’s one takeaway I’d like to give you, reader, when you encounter a mom who’s lost a preborn or newly born baby, is that she hasn’t lost “just a baby.” She’s lost a lifetime with her child.

3) The death of a child is every parent’s worst fear, and therefore it’s very hard for most people to willingly embrace the world of infant loss.

The loss of a sweet baby highlights the reality that children die. Some of the most candid admissions I’ve received since losing Elliot have come from people who’ve admitted that talking about his death makes them uncomfortable. Not because they don’t care, not because they don’t love me or him. It’s because talking about Elliot’s death brings fear to the forefront of their own minds: fear that their own child could die.

Do you remember finding out your were pregnant with your living children, or when you got the referral for adoption, or when that court day finally came and your child was legally yours? Remember that tightness in your chest as you worried something might go wrong? With the pregnancy, with the delivery, with the adoption paperwork? Then when things did turn out okay, that huge relief as you exhaled that stress and worry out. Your child was okay. But you’re a parent! That stress ball in your chest returns with every stage of development! First steps, first time navigating the stairs, first play date at someone’s house, first day of Kindergarten. Over and over again we worry, despite our best efforts not to, that something bad might happen. We know, at our core, that something bad could happen.

I believe this fear of death, and specifically fear of a child’s death, explains why the two points above so readily exist. The abortion culture can’t even call abortion death; they call it “terminating a pregnancy.” A pregnancy is not a person, so what’s the big deal about terminating it? It’s a sad convenience that terminology can deceive people into accepting acts they would normally find reprehensible. As heavy as my heart feels for babies who are lost to abortion, it is also heavy for the individuals, many who are good and beautiful people, who really can’t see abortion for what it is. Discomfort with and fear of death have allowed the lie of abortion to replace truth.

Fear of a child’s death is also one factor that makes it more palpable for people to regress into the “it was just a baby” thinking. Miscarriage is common. Probably you or someone you know has had one or more miscarriages. I very much understand why some people, even women who’ve had miscarriages, don’t think about miscarriage as death. There is much less attachment, for many people, to a baby they’ve never seen. It can feel SO much easier to just go on with life. Some people can do that; others cannot. However, miscarriage IS death. I saw my little Avery’s heart beating, heard her rhythm echo in the room of the doctor’s office, the day before I miscarried her. Of course that was the death of my child! I need to be able to grieve her that way. Onlookers feel the weight of stillbirth or neonatal death more intensely, I think, because when a baby is at a viable stage and “looks” more like a full-term baby, the reality of death sinks in. But still, many people find it more comfortable to think of a baby who dies as just “not meant to be.” It’s easier to move on mentally and think of more pleasant things. I get it.

But isn’t it odd that the one reality we all have waiting for us is the one thing we hate talking about? You will die. Your child will die, whether it’s when he’s 9 or 90. We know it. In my Christian circles, we often talk about a far-off heaven hope, but I don’t know that we really sit around and talk about death. But people who’ve lost children do sit around and talk about death. We think about it. We wonder about it. We have support groups and newsletters for it. We kind of long for our own so we can be with our children once more.

There are some unique and amazing people who enter into this world of bereavement. I’ve met a lot of them along this journey. They are the people who run organizations like Now I Lay Me Down To Sleep, Walk With Me, and M.E.N.D. Individuals who live in the world of infant-loss support groups, or any kind of bereavement organization or ministry, face death every day even though they don’t have to! What angels!

My husband and I were recently invited to sit on a parent panel at the hospital where I lived on bedrest, and where Elliot was born and died. To say it was a trigger being there is an understatement. But it was the reason we were on the parent panel that compelled me to go: we spoke to a group of nurses who were there to learn how to better care for families who lose babies. I’m so proud of a nurse friend of mine, who took care of Elliot and me during my stay at St. Joe’s, for heading up this endeavor at that hospital. She doesn’t have to do this. She’s willingly entering the suffering of bereaved parents in order to give mamas like me greater hope and comfort. And I can’t say enough about how incredibly validated it makes us feel, and what honor she and other nurses are showing to Elliot and other babies, by entering the discomfort of death with us. As we shared our story, I saw the faces of the nurses there moved with compassion, their eyes brimming with tears. At the end of the panel, the nurses spoke to the three couples there, and told us how they’ve never forgotten the babies they took care of who passed away. They shared special ways they remember and honor the babies who were in their care. When the panel was done and we were about to walk out, one nurse stopped me and reminded me that she had taken care of me nights on the antepartum wing. I remembered her. After Elliot died, I sent a letter and some pictures to my antepartum nurses to thank them for all they’d done. She told me that my letter and Elliot’s pictures hang in their break room. “We think about you all the time,” she told me.

People like her are the hands and feet of Jesus to me, no doubt.

I could write pages about the friends and family in my own life who have entered into the reality of the death of my child. They’ve walked and talked with me, visited his grave with me, they display his picture in their homes, they express their own hurt over his loss, they SAY HIS NAME. Their examples inspire me to be continually compassionate towards others.

And, really, Christians do have it right in thinking beyond this life. There is more to come, and that reality is the only antidote to crippling fear. Hope for eternity does not take away my grief, it really doesn’t. But my grief has made my hope more concrete. And with this more concrete hope in what’s to come, fear does not have the final word. Yes, anything could happen to me, to my children, to my husband. I pretty much hate that. But underneath the dread of all that MAY be lies the stubborn anchor of what WILL be:

51 Listen! I am telling you a mystery:
We will not all fall asleep,
but we will all be changed,
52 in a moment, in the blink of an eye,
at the last trumpet.
For the trumpet will sound,
and the dead will be raised incorruptible,
and we will be changed.
53 For this corruptible must be clothed
with incorruptibility,
and this mortal must be clothed
with immortality.
54 When this corruptible is clothed
with incorruptibility,
and this mortal is clothed
with immortality,
then the saying that is written will take place:
Death has been swallowed up in victory.[o]
55 Death, where is your victory?
Death, where is your sting?

1 Corinthians 15:51-55

To be clothed with Christ’s immortality, safe and in his presence…that’s the happy ending we’re all waiting for. In the meantime, cherishing unborn life, celebrating every child’s existence, and sitting in bereavement with others–these are things to work toward. These are things to talk about.

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