Two days before the official death of my daughter, before my uterus tore and I hemorrhaged and my bowel was damaged, and I spent 8 painful days in ICU and recovery-- I wrote the passage below to friends and family on my private Facebook page.
I am still grieving. I am still recovering. I've only recently started writing about other things again.
But this is why I've been silent online.Writing anything without acknowledging her, her existence, my brush with death first, feels like I'm faking it. Like I'm pretending for the sake of others that this didn't happen. That she isn't a part of my life, who I am, my story. And she is. I want to mention her freely in the future if I want to. I want to write about what I feel and how I feel it, and I want others who have experienced something similar to know they are not alone, as so many other parents have done for me.
The problem is, I've been trying to think of how to say what happened to a broader public. To explain where I've been, and why I'm still not quite me inside. Why I never may quite be me again.
But then I realized. I'd already told this story.
It's a bit of a cold version of events in the first half. Focusing on the facts. At the time, separating fact from the raw, impossible pain I felt every day, was the only way I could function.
So here it is.
(Minor edits made to protect privacy of family/children/jobs etc)
What I Wrote to Process My Goodbye:
The meaning of the name Lettie is "Joy and Gladness." More on that later.
I am sharing the following not because I owe anyone an explanation, but because I think it is important to understand what is happening to my daughter and what is happening to me. That her story is understood.
Here is nearly the entire story. This is the short version, and it is long.
Today I saw my OB to check my vitals and to check on our daughter. Her heartbeat is still there. However, the placenta, amount of hydrops, and rapid growth of the tumor are all so large my uterus is measuring 8 1/2 weeks ahead, or bigger, than it should. As every appointment confirms, the longer I carry her, the worse everything becomes for her.
If you haven't followed my other posts, you may not know that that as of two Fridays ago we already confirmed that her lungs had stopped development, and collapsed. That her kidneys were already not functioning properly and that one of them may have already ruptured. That the hydrops (fluid retention) is so bad her liver was/is floating near her heart. That the tumor, which is now bigger than she is, has veins, is stealing her blood supply, and straining her heart. There are details from the MRI they didn't even tell us, which I had to read on the report myself, because while terrible, they hardly factored when compared to the lungs -- which could not, and will not, be able to hold oxygen even if hooked to a machine, even if given more time to grow -- which they can't do because of the fluid and tumor taking up all the space. The tumor you see, while it originated on her lower back, cuts through her pelvic area about 1 inch thick (as of 2 Fridays ago) and continues to grow in her abdomen. It cannot be removed in fetal surgery, and would be extremely dangerous to remove once out even IF all the other problems hadn't happened.
I don't talk about the state of her legs because it hardly seems to matter. In fact, it doesn't.
The only life support available to my child, is me. Once she leaves me, there is nothing they can do to help her. The moment she no longer has me, if she could survive birth at all, she would be gone (because she is incapable of taking breath or receiving oxygen).
The bigger everything gets, the less likely I am to survive birth, even c-section, and it will be difficult and dangerous, regardless of life outlook. If I make it there, as the advanced case of hydrops is so much and so rare they can't even give me proper numbers on exactly how at risk I am for severe and sudden preeclampsia and mirror syndrome (heart failure). I've already been to the ER 3 times for pregnancy related emergencies since things began to advance.
When we first discovered the spontaneous, no reason for it, fluke of a tumor on her lower spine, we were given a host of potentials.
The Best Case Scenario was this:
The tumor would be attached to her lower spine by a stem (MRI needed to confirm). Perhaps a wide stem, but something manageable. Fetal surgery experts in the Baltimore area would approve us for experimental utero surgery (because this was not a genetic/chromosomal defect). It would be risky, the baby might not survive, but removing all or most of the tumor would reduce hydrops, remove the strain from her heart, and allow the rest of her body to continue to develop, if not just a few weeks behind. Early labor may be necessary. Her heart may need to be treated after birth due to the strain it was experiencing. And, she may never walk. You see, the location and size of the tumor on her lower spine had impeded the development of her legs. They were/are very tiny and her feet extremely clubbed. If it was a space issue only, they could treat the club foot, and try different supports. However, if the tumor had caused nerve damage in this area, she may be paralyzed from the waist down. All of this was the best case scenario -- assuming that her heart didn't give out from the strain it was already under before any of this could happen.
That was the BEST CASE SCENARIO.
And I embraced it. I hoped and wished and prayed for it. We could do this. It wouldn't be easy. We'd have to change our lives and our house and so much to make room for her, but we could do it. I ate and slept healthier than I ever had in my entire life. They said it didn't matter, but I figured, she needed all the help she could get. I also decided to share some of what was happening, because I figured the more people in her corner, the better.
In the week it took to get the necessary tests done for approvals, everything only got worse. The tumor as stated above, was much more intrusive and not connected by a stem. It actually wraps the waist and goes inside.
Our options reduced.
Reduced to things I would never wish on anyone.
- Wait. Wait for our daughter to have - best case scenario - heart failure/ heart attack. I won't discuss the worst scenarios of how she could die inside of me. While we waited for her to die a painful death, we could monitor me, to make sure that I too don't suddenly die due to complication. And accept that vaginal birth may become impossible. At the time, she was already over 19 centimeters wide at the widest part. C-section, given the size of everything, even then, would also be more dangerous. The chance of Hemorrhage also increases regardless of extraction method. Preterm labor could also trigger, which would actually be a good thing in terms of my health but still very dangerous.
- Induce preterm labor. A requirement for this would be to stop the baby's heart. All the dangers of labor still apply to me. Stopping the heart would be done with an injection, straight to it if possible, to make it as quick and painless as possible.
- To do an official termination, stopping the baby's heart (same injection), with surgical removal as soon as we could. Same result for her as in 2, except the surgery is vastly safer for me.
- I don't want her to suffer like that. She is already suffering every day, and the only thing in store for her is worse suffering and a terrible death.
- I owe it to my boys to try to come home in one piece, alive. If I can do that. Or ensure a better possibility of that.
The rest, who don’t have the short and difficult but manageable/reasonable life option, refer to it as this impossible dichotomy between “Life” or “Peace.”
The problem is, “Life” is not even on the table for us. Our choice is terrible death or peaceful death.
Still it took me 3 days to make the phone call. Despite both of our deteriorating healths.
And when I made that phone call I felt like the scum of the earth.
I have since gotten the opinions of 3 different doctors. It all comes back to these three options, and each one who sees me, sees us both in a worse state, and wants to make sure I am comfortable with my choices. And when I ask, they each confirm option 3 to be the safest for both her and I.
I am more at peace with this choice.
And I still hate it.
I thought the next struggle would be the actual procedure. But I was wrong.
The following is simply the facts of my reality. I want to stress this. I know it has made several important people in my life very livid about a number of things, but I just don’t have the energy to be there.
So, here are the facts:
Options 2 & 3 are considered elective abortion and thus not covered by my insurance because my husband works for the government and thus has the government's insurance (an otherwise fabulous plan), and Congress votes every year for government health plans to not cover this (Yes, this is different from the Hyde Amendment. Insurance is private dollars.) Technically I qualify for coverage by the singular exception because the conditions to me are “life threatening” and “the birth outcomes and viability of the fetus are poor.” However, Our provider is also government run facilities (this is where the Hyde Amendment comes into play) and don’t offer these services. To get out of network services approved, your doctor needs to get their request for referral approved by a utilization manager. To get the referral, my doctor needs to prove the procedures are "medically necessary." And while there is some wiggle room here, it basically boils down to "dying on a table.” “Most likely to die on a table,” isn’t close enough.
Our referral request was denied.
Thus, we were told we had a week to come up with almost $12, 000, the cost of the procedure. Plus, we'll still need to make funeral arrangements.
I considered option 1 again, and again I could not face the idea of what could happen to my daughter or I if I waited. We immediately started trying to figure out where we could get the funds, what loans were possible, what our resources were.
Meanwhile friends and family started helping us. Some directly, but most in private. The surgical center, upon hearing about our insurance and situation, gave us just over a $4000 discount. And with the shocking, unbelievable graciousness and generosity of friends, family, strangers, local abortion funds (which can only donate $100-$200 but still) and last ditch efforts, my daughter won't have to suffer much longer.
Since I started being open about our situation I have been stunned by the pure amount of love and support from everyone in my life. And these recent concrete actions I can never repay in any meaningful way. I am grateful for every ounce of help received, and also pained by it, by the fact that we need it. Every dollar hurts. Not just because of the insurance situation, but because of the situation period.
If I could erase it all and simply save my child I would.
I cannot imagine what mothers who face these options go through who do not have this support. My heart breaks for them, and I am rushed with additional guilt for having such a strong network of loving people. I know this is ridiculous to some degree, but you feel what you feel.
Tomorrow, we will say goodbye to our daughter. We will end her suffering in the most humane way we can. If she was on a life support machine, we could turn it off. Unfortunately, I am the only machine that can sustain her, and not for much longer. So I have to approve something I never thought or wanted in my entire life I would ever, ever need to approve. A part of me is going to die tomorrow with her, and there’s nothing for that. And I needed immense help to make that happen.
On Wednesday, I’ll have the safest possible surgery, which at this stage and with how large the tumor is, still is not going to be easy. There are still risks. Thankfully I live close enough to DC and can have this done in a center with many surgeons who do many different types of surgeries, across the street from one of the best hospitals in the country for prenatal and postpartum care.
We’ll then have her remains sent to a funeral home. And we’ll have to say more official goodbyes. And since we’re not tied to this area, memorialize her life the best way we can find. Then I’ll go into grief counseling.
In short, the worst is yet to come.
We don’t have to name her. Not really. “Baby *****” is acceptable in such cases. But she has a brain that despite everything, developed the best it could till a few weeks ago. And she has a heart that is impossibly strong, strong enough to worsen her detriment. And she has love. We love her. Her brothers have loved her since the second they learned of her. G kisses my belly everyday. R had great plans for her. Her grandparents, aunts, uncles, both official and unofficial, have loved her.
And she has inspired love. And inspired kindness. In so many people. Beyond what I could have imagined. And in the midst of all that is terrible and horrible and nearly statistically impossible that has happened, that love has gotten me through from one day to the next. And will likely continue to.
She deserves a name.
C had liked the named Lottie, mostly for the sound of it, but it means “free man,” which feels kind of weird, especially given the circumstance. But Lettie, Lettie was phonetically close, so I looked up its meaning.
Joy. Gladness.
Something I can never truly give her, and the main thing she gave to us before all of these events started to collapse upon us. So if I can return it in nothing but name alone, so be it.
I’ll never be able to introduce anyone to Lettie. To the feisty and incredibly strong girl I am sure she would be. The baby who if bumped by one of her brothers, always punched back. Who rubbed her face and sucked her thumb while the doctors poked her with sonograph wands repeatedly.
This story and her name is all I will have.
So I give it to you now.
And I will give it in the future to anyone who really needs it.
I had thought that post would be the official story. The final good bye. The last I would need to explain or work through (besides the obvious grief). The end of the updates. However, after the failed attempt to stop her heart, the horrible check in process, the incredibly immense pain and preterm labor triggered by preparations for the procedure, the hemorrhaging and almost dying -- I continued to write to friends and family, to update them, to distract myself, to deal with my feelings, to figure it all out the best that I knew how.
Because of the hemorrhaging and damaged bowel and torn uterus, I had to have a number of emergency surgeries. We had planned for a 2 hour out paitent procedure and got a 6 hour horror surgery followed by ICU and and a long hospital stay. Everything the doctors feared could happen should I go into labor or try to deliver happened plus some more.
And I haven't even discussed what we face should we try again.
Regardless of all of that, even if it had gone well, it was naive to think that her story or mine was done.
I got to hold her, days after, her cold little, lovingly swaddled body. This may seem weird or odd or morose to those who have never lost a child, or an infant, but it ended the night terror. It proved she was real. It let me say a much better good bye.
I have her ashes here in the house. A box dedicated to everything Lettie. All the cards and letters. Some dried flowers. Her certificate of, well, existence. The necklace that features a few of her ashes. Her hand and feet prints. The blanket a friend had started for her and finished for me.
My due date is approaching. Ticking nearer and nearer. The people I was pregnant with, due around the same time as, have had or are having their babies as I write this. My maternity leave would have been imminent. Instead my FMLA was spent on learning how to walk without a cane and not cry in public.
As time passes, I can ease more and more into what used to pass for normal. Have a laugh not outlined by pain. But one thing I wrote in that not-so-final-story bears repeating: "A part of me will die with her... and there's nothing for that."
When my cousin committed suicide early last year, I wrote, "you haven't heard real pain until you've heard a parent cry for the loss of their child." I was talking about my aunt, crying in the room, in the background of the earth shattering phone call that told me my cousin was gone. Even then I knew that was a pain no one should ever have to feel. Though I'm sure different, (what's a few months to 17 years?), I understand those cries more now than I ever wanted to.
Those of us who have lost our children, before they were born, after they were born, even after no one else would refer to them as a "child"-- we're no longer on our knees, raw, guttural, seething loss. We're out in the world. Walking. Working. Even sometimes celebrating others. For me, the complete physical breakdown I had after the doctors went over the MRI images with us, the maddening depths of guilt I felt in the middle of the night in my hospital bed, have not returned in their physical intensity. But the truth is, we're crying every day. Probably for the rest of our lives. Not always out loud, with heaves or tears. But the scream you scream when your child dies never ends. It just hits a pitch deep inside you that is imperceptible to nearby ears.
And you try to make the best of it.
If we don't mention it, it's probably more for your benefit than it is for ours. We don't want to ruin your day or damper your mood. But, sometimes the silence is for us. We don't owe anyone our story, and we can't bear answering the questions about the what if's we've barely made peace with ourselves.
I am going to be "okay." So far as it matters. I have things to live for, people still to love and hold onto. I'm learning how to appreciate the good in the world again, that there is good in the world again. But the scar that races up my belly and sinks down to my insides isn't my only scar, and it's certainly not the deepest.
And that's all there is to say.
For now.
I love you little one. You're writing is beautiful. Lettie will not be forgotten.
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