Amelia’s Grace
First, the facts, which you will see form a fairly short list. Encephalocele’s are part of the National Institute of Rare Disorders, so certainly what is out there is not been well researched. After her surgery, after I could research it without throwing up, I popped open my pediatric nursing text, and sure enough, there was a tiny paragraph on one page, where as the other neural tube defects had entire sections devoted to them.
This is what I found in my brief research (as it pertains to my daughter):
- It is a neural tube defect that develops around 28 days of age representing a defect in the skull where brain tissue (or not) herniates through.
- The absence of brain tissues in the herniated sac is the best indicator of survival.
- Per the CDC website, encephalocele is found in 1 of every 10,000 births (I have seen it, I should add, as high as 1 in 5,000, which doesn’t sound too rare to me)
- It’s the prominent cause of spontaneous abortion before 20 weeks.
- Having an encephalocele reduces the chance of live birth to 21%
- Only half of those 21% survive.
- 75% of those survivors have a mental defect.
- The risk of mental defects is higher when the defect is located on the back of the head.
- It’s more common in females than males, more common among siblings, and has associations with many chromosomal abnormalities.
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Now, I didn’t go home and start googling, because I have learned that The Internet doesn’t always tell the truth! *gasp* I KNOW. That’s the problem with The Internet sometimes, especially when you’re looking up something about your daughter’s head: it’s unfiltered. Like Lucky Strikes.
Besides, denial being a powerful thing, I sent my mother, brother and sister in law out for as many small hats as I they could find to cover up Amelia’s bump. Out of sight, out of mind. Besides, I couldn’t remember what it was called AND I DIDN’T WANT TO BE REMINDED. We’d scheduled a follow-up with the pediatric neurosurgeon for a week to the day that we were discharged so that we could go over the MRI that she’d undergone.
This is a picture dated February 3, 2009, which meant it was before we learned specifically what she had. We were in limbo. I was not well.
You want warts, Internet? YOU GOT THEM. (on me, not her)
Dave took this picture and said, “You look so SAD,” and you know what? I was.
Because for all the advances in modern medicine; for all that we have learned, kids still die. Babies still die. Life is fucking fragile, it’s unfair and sometimes it sucks. These are facts too. Until this stops happening, I will always carry this sadness around in my heart, as much a part of me as my black hair and my love of cheeseburgers.
For all of the scans, the vials of blood taken from my daughter, for all of the experience the neurologist had, at this point, we really nothing to go off of. I had no way to know which way was up.
Dave loves a plan and once he knew we’d be meeting with the doctor, he felt better. Dave also never had to rotate through the transplant floor and see kids who would die if they didn’t get a new kidney, so it’s safe to say that both of our perspectives are a bit skewed. Somewhere in the middle would have been the rational place to be, but what the fuck is rational about living in limbo?
No, I couldn’t celebrate Amelia’s birth until I knew that she wasn’t just going to die on me, nor could I handle the (supposedly) well meaning people who dismissed my fears. No, Internet, I don’t mean you, don’t worry.
In the face of these sobering facts about my daughter’s condition, I quickly grew weary of people telling me not to worry. It would be like telling me telling you to hold your breath for a week. Not quite within your control. It felt like a slap in the face after the 56th time, and although I’m pretty sure at least one person did it because they were mad at me, I imagine that most people just thought that they were being helpful.
I could write volumes on how unhelpful that was.
But brain herniation or no, I had a life that I had to lead no matter what. The world marches on even after yours has fallen apart, and I can’t help but think it was for the better. I still had a toddler to feed and love on, a 7 year old who was so proud to be a big brother, and a menagerie of animals who missed me desperately and followed me about the house nervously wherever I went.
(Pointless Rambling: my animals are really, really keen on sensing emotion. If I get upset, my cats? Come running to lay on me. The dogs both sit on my feet, and the bunny hops around her cage nervously. I don’t pretend to understand why)
I spent most of that week cleaning the house from top to bottom, trying to channel my nervous energy away into something more useful than wringing my hands and gnashing my teeth. I find it’s the one thing that helps quiet my mind, short of exercise and gardening, and it being February in the Midwest, and being freshly postpartum, those two ideas weren’t exactly going to work.
I suppose I could have dug a large ditch in the backyard, because fuck, digging out a trench in the frozen ground? WOULD HAVE TAKEN A LOT OF TIME AND ENERGY. And then spring would have come and I would have kicked myself for digging a trench in my already wee backyard. I guess we could have turned it into a mud-wrestling pit, but I fear I may be going off track here.
It’s a real shame I didn’t have a deck to build or a house to paint, because I could totally have done it singlehandedly right then. Never underestimate the power of a parent in crisis mode, right?
I’ve never felt like more of a fraud than I did those first few days home. I was so happy to be home, every single time my daughter woke up from a nap and opened her large eyes to look at me, I got misty-eyed. Here was this beautiful creature, all my own, who I may have to give back in the next few weeks. This miracle whom I’d loved from the moment I found out I was pregnant was probably not mine to keep.
I don’t remember a whole lot about those days, although I do remember how loved she was. Even by Alex, my little man, The Momma’s Boy, ESQ, was enchanted by her loveliness. Even if she did sort of look like a garden gnome. She was my garden gnome, dammit. I was so, so happy and so, so sad all rolled into one gigantic, arrogant, leaky puss-bag of a woman.
Through a haze of anti-anxiety meds, the first week passed and we found ourselves at the door of the neurologist, who looked shockingly like Stephen Colbert. He was a kind man, which reminds me that I probably should write him a card telling him how incredibly kind he was to all of us. It can’t have been easy to see us there, I was weeping softly, my daughter so new and fresh; still a fetus, really, and Dave, poor Dave, just trying to keep it together for the rest of us.
————-
I remember it happening when my father had his unexpected heart attack last winter and wound up in the ICU for nearly a week. A day like any other, a day like today, in which my biggest concerns went quickly from ‘œMan, I hope Alex goes to fucking sleep tonight’ to ‘œMan, I hope my dad makes it through the night.’ The shift in thinking here is vast and it’s frighteningly quick.
Suddenly, even news that on a normal day would be some of the worst news you could hear ‘œhe had two clots, one of which is threatening to kill him, but we’ve removed one of them’ sounds rather’¦good. It could always be worse, you tell yourself as you pace up and down those hospital corridors peeping into rooms whose occupants, well, HAD it worse than you do. But somewhere in those dark recesses of your brain, you remind yourself that even though for now, for RIGHT now, things are going as well as you can expect, they can sour without warning.
Yesterday, The Daver and I took our week old daughter to a pediatric neurosurgeon after we picked up her MRI films from the hospital. We sat there in the waiting room, me with a baby on the boob while he filled out the piles of paperwork and received the kind of pitying looks from the other patients as they walked by that made my heart swim with tears.
Yes, it reminded me, it is this bad.
After the neurosurgeon, ranked one of the best in the area, bounded into the room, filling it up with a sort of ebullient energy that only someone who abso-fucking-lutely loves his job has, he flicked through the massive stack of films to find one to show us what was wrong with our daughter. In cross-sectional picture form.
And for some reason, despite my incredible love of anatomy, my utter lack of horror for things like internal organs and dissections (I am, apparently, my father’s daughter), I could hardly handle looking at these films that showed my daughter’s head. In ways I never wanted to imagine it.
It’s funny'”I know HOW these things work, I could probably give you a dissertation on reading an MRI of the brain without much prep'”and yet seeing these parts of brain, parts of my DAUGHTER’S brain, made me cry and feel revolted. It felt unnatural to be looking at these films. In several, I could see that she was crying, or at least her mouth was open and neck arched backward and I ached. I physically ached for her.
Sure enough, right where some brilliant tech had put some of the measurements on the films, the brilliant and kind doctor pointed out what we can easily see from the outside: her cyst. In medical terms, as I alluded to by the title of my last post, it’s called a cephalocele, and it’s sort of like a hernia on the skull where the bones of the skull didn’t properly fuse together while in utero.
I’d known all about cephalocele’s before I’d birthed Amelia, before I married Daver, and I knew enough to know that the one that my daughter has been born with is really pretty minor. Typically, they cause all other sorts of neuro symptoms and retardation, but by the grace of God, Amelia seems to have none of those. We will, of course, know more as she ages and appropriately (or not) hits all of her milestones.
The upside to her cephaolcele is that it’s not an ENcephalocele, which means that the cyst is full of cerebrospinal fluid WITHOUT brain matter. The bad side is, of course, that she’s still going to need brain surgery in the following weeks. And no matter what way you try and spin this, it’s fucking scary.
(ed note: the above paragraph was not true, and was written the day after our appointment with Neuro #1. Amelia did have a true encephalocele, complete with brain matter)
The bounding doctor would like her to have this surgery in the next couple of weeks so she won’t remember it when she gets older, and while it makes sense to me, I’d still like to cocoon myself away from the thought of my daughter going under the knife for the next, oh, I don’t know, 60+ years? By which time I’ll be dead and I won’t have to sit in the PICU for several days while she wakes up, my breasts aching and full.
Unfortunately, the doctor whom I adored on sight, does not take my insurance and although I have a PPO, I’m not sure we can swing the thousands of extra dollars it’ll require to have him specifically do the surgery. He referred us to a colleague of his whom we will see on Wednesday of next week and form a Plan Of Attack.
I only wish this Plan Of Attack included leaving my sweet baby girl’s head unscathed and eating a bunch of Funyons while sitting on my bum, but I’m pretty sure I’m not going to get out of this one.
And so I sit here, waiting again while freaking out quietly, and trying to remind myself that things could always be worse. Always. It doesn’t help much, but it’s all I have to cling to right now.
Well, that and my brand new bottle of Valium.
Oh Becky…you are killing me with this. I had a similar but not really the same experience as you, that I haven’t written about yet, and you are practically writing my feelings for me. I wish I had known you when you were going through this…I could’ve offered better words than “Don’t worry”. I hate those words. I know the feeling of walking around, fake smiling, continuing with your life, when all you want to do is throw up, in the vain hope that you can expel the knot of fear and anxiety and coldness sitting in the pit of your stomach. I know how it feels to want to crawl out of your skin, just to get away from your thoughts, to scream at the top of your lungs for someone to give you a goddamn answer, or to tell you how it’s all going to turn out.
And again, I am so glad I already know the outcome, and that you came out smiling on the other side of this.
I wish I could be there, in person, for you on that day. If I could be, you know I would be.
Oh my. I didn’t have time to read over the weekend, and now am glad I didn’t because it was chaotic in my house and I wouldn’t have been able to focus.
What a story your Amelia will tell when she’s older.
Oh, sweet Becky. My heart is so full and achy for you right now. I wish I had a pitcher of margaritas for us to drown our worries in together. I’m sending good juju your way and thinking of your family.
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[…] Random Feed wrote an interesting post today onHere’s a quick excerptFirst, the facts, which you will see form a fairly short list. Encephalocele’s are part of the National Institute of Rare Disorders, so certainly what is out there is not been well researched. After her surgery, I popped open my pediatric nursing text, and sure enough, there was a tiny paragraph on one page, where as the other neural tube defects had entire sections devoted to them. This is what I found in my brief research (as it pertains to my daughter): It is a neural tube defect that de […]
I wish I could have been there, to help you dig that trench and plan the mud wrestling, even though I prefer jello or pudding wrestling (tastes better when licking it off the winner).
I am so proud of you for being able to write this out. My heart aches so hard for you and Amelia and the rest of the family.
Oh, and however animals sense the emotions? It’s amazing. The weekend of 4th of July last year when I was vomiting for 52 hours straight (remind me to blog about that sometime….) our 8 month old puppy who NEVER stayed still for longer than 5 minutes before running off to get a new toy or play with our other dog or eat or drink or do ANYTHING but sit still laid down next to me. The entire time. Whether it was in bed, crouched over the toilet, in the bathtub (was much easier to clean up than the bed and more comfortable than the toilet). He stayed right there with me. It was wonderful.
First i just wanted to say Happy birthday- and no I am not so crazy person, but you mentioned this last week and i remember only because my birthday is tomorrow and all cool people are born in july.
I can not stay away from here, this story is amazing. I was born with a Hemangiomas on the top of my head, which was removed when I was 18 months old, and while it was not dangerous my mom still talks about how worried she was before they found out what it was. I bet she could not imagine this roller coaster ride you took.
I’m so glad you posted your story (so much so that I post things like MORE MORE MORE in your comments) and I feel for you because we also have “Scary Stuff” at our house too, and frankly, I am kind of sick of it. And I hate being told not to worry almost as much as I hate stupid people in the pediatric ER. But the show must go on, right? I haven’t even been able to finish my post about what happened for us last Saturday night so I know what you mean about the freak out. At least you have legs, sister, at least you have legs.
Your story is truly amazing to me. It is truly making me realize how good I do have it.
Amelia will know how much her mama loves her. She will.
Oh Aunt Becky. You are an amazing person and your daughter is beautiful. I am just sorry that you have to go through this with her. You are both very stong, and I pray that it all turns out for the better.
You know… sunshine and rainbows and butterflies. All that.
Becky – Once again I am so deeply sorry you & your family had to endure such heartbreak. I can’t imagine what it must have been like & I don’t know you personally but I wish I could have been there to help or at least slap those whose said “don’t worry.”
I can’t tell you how touched I am by your writing, it is so raw yet so honest. I have a friend whose daughter was born with her skull fused together & had to have neurosurgery and all throughout she didn’t let on to her internal struggles. Two years post surgery she finally opend up & it broke my heart that she kept it all inside. I think your honesty about the experience & your roller coaster ride of emotions gives women “permission” to open up. I’m sure you have helped many by sharing your story.
Amelia’s story is so heartbreaking and beautiful and scary. You’re killing me softly.
Can’t you just imagine she’ll read this someday and then give you a giant hug and kiss for loving her so much. wow.
I feel so sad that you didn’t get to fully experience that intense joy that comes with a baby who is so loved and wanted. No parent should EVER have to face anything like that. xoxo
My dad was a combat vet, decorated for bravery, so when he spoke about being brave it was from a position of relative authority. When I asked him about his war experiences he would only say stuff like, ‘if it were easy or comfortable, everybody would be brave.’ And to him it never mattered what anybody else would think of him. He would have rather never gone through it at all. Just like I imagine you’re feeling now. But parents are brave. We have to be. And hopefully you’ll find some comfort in learning just how strong you truly are as this progresses. That’s the best anybody can expect sometimes.
I am so grateful for Amelia’s grace. Sometimes, life grants us these blessings. A near miss, closer than we care to think about, but healing and happiness in the end.
I can’t even imagine holding it together during what you went through. I hope it’s helpful to relive, and perhaps now it will lose some of it’s strength in your memory.
You’re freaking killing me!
I can only say – so beautiful. I could feel the love.
Your miracle baby. Your miracle baby.
Amelia is such a miracle baby what an amazing story, and yes I too wished I knew you then Aunt Becky. At the time you were going through a sick child so was I and I would have liked to share hugs and words with you….
I am so sorry you had to go through that as like I said it is not something I wish on anyone. But what a amazing story for an amazing Little Girl!
I didn’t see a look of sadness on your face I saw a look of hope that shone through the fear. Great story
Oh Becky…this just rips at my heart and the only thing that keeps me from losing it is knowing how beautiful and ALIVE your little girl is right now.
I have learned so much beacuse of this. Things I never wanted to know. You are my bravery hero.
by the grace of god.
Aunt Becky, you really, truly, are amazing. I’m so glad I am getting to share this story with you even if it is only over the internets.
Oh, she is so beautiful, what a sweet little girl! And so unfair to have to go through so much so soon. I cannot imagine what you’ve been through. Thank you for sharing your story with us.
So many hugs to you and your family – thank you for sharing this with all of us.
Fuck.
I so so relate to things being fucked up, when the baby comes. So sorry you went through that, and really hope that writing it out like this helps you to purge.
You are fucking awesome. One day, I’m going to meet you, look into your eyes and say, “You are fucking awesome!”
XOX
An online friend referred me to your blog & I’m so glad she did! I can relate to your story on so many levels… having had my youngest (7th) born with spina bifida, thus making him my 4th child with a neural tube defect. We’ve done the brain surgery route for chiari malformation, 6 times thus far, plus lots of other surgeries, and damn if I don’t totally agree with you that people who dismiss your fears or minimize them or, worse, try to convince you that you’re being a big ‘ol baby because you won’t buck up & move on, are *very* unhelpful. Kicking them in the teeth never seems to be an option, either, though god knows it would sometimes make ME feel better!
Anyhow, all this babbling to say that I’m sorry you had to go through this with Amelia and I’m really happy to have been sent to your blog because I enjoy your writing a lot.
She is so beautiful.
Surely an angel put on this earth.
Truly a miracle.
Things like this remind me to NEVER ever complain about a fucking crayola-ed wall or a puddle of pee on the floorGetting “gratitude” tattooed on my arm. My best to you and your family, Amelia is beautiful, no matter what!
I found your blog after Amelia was born, so this is all very new to me. What a beautiful miracle. I’ve been waiting until the end to comment (I know, I KNOW! You have been so patient!) but these posts are so touching. Thank you for sharing!
Oh, Becks. My friend. I’m hugging you through the Internets.
Seeing that picture of you made my want to hop through time and put my arms around you. What a lovely mama you are. Thank you for always sharing your words and thoughts with us.
I don’t look at my Google Reader for a few days and Bam! I just started reading you a couple of months ago so I wasn’t aware of all your family had been through. You are truly and amazing woman and I can’t wait to meet you at BlogHer. Just expect an extra big hug when I see you.
And Ameilia is an angel.
On July 4, 2000 my neice gave birth to a beautiful baby girl only to have her whisked away to another, better equipped hospital and placed in the NICU unit because she was missing 75% of her intestines. They hemmed and hawed around, didn’t put her on the recipient list and a nurse was once overheard saying to try something on Makayla to see if it worked before giving it to another baby. We finally got Makayla sent to a hospital up north (can’t remember which one) but it was too late. Things were already too far gone. They sent her back. Almost six months after she was born Makayla was released to go home only to return to the the PICU the following day. It was obvious those people had sent her home to die because they had fucked up. We buried Makayla on January 1. 2001. As I read everything you went through with Amelia I felt every wrenching moment of it with you. If someone ever tells you you were being whiney or over-emotional, call me. I will personally stomp the shit out of them.
When you said what your daughter had (way back then a hundred years ago), I couldn’t look it up because I didn’t want to know how bad it could be. I was already worried for you enough. Ignorance wasn’t bliss, but it wasn’t neuroticly checking your blog for updates every hour.
Oh, sweet Amelia. She has been such a miracle. I would be perfectly happy to go through my life without reminders that no matter how nice you are, no matter how little you deserve it, terrible, awful things can still happen. I am so, so grateful that she is the darling little person she is today. And I hope you never have to feel again that terrible sadness that I can see in that photo. No one deserves that.
Now having had both I can say that boys physically exhaust you and girls emotionally exhaust you – in a variety of ways.
Larissa is going for an MRI on Monday to make sure the cystic hygroma she had in utero isn’t causing any problems now that she’s out of utero. Hopefully she, like Amelia will be a-ok. I’m sure in no time the both of them will be asking for tattoos and dating 😉 You’ve written her story beautifully.
You don’t look sad to me in the picture. You look like someone who is courageous while scared to death.
It makes my heart go out to you.
I’ve just been catching up with your family’s story.
I’m so sorry about the nurse who intruded when they took Amelia to NICU. I recoil to think there are people whose only response to another’s pain is to demand that they not bother her with it. “Pull yourself together and be strong”–it makes me shake my head.
Sadly, it seems there was more insensitivity than kindness as you and the Daver went through this. I can’t think of anything more excruciating, than to go through something like this immediately after giving birth, with the ups (“breathe easy-it’s ok”) and sickening downs (‘she’s gotta go to NICU’). And to know that you have children at home who need you, one of them a baby himself. Every moment of that was torture, and you had to go through an awful lot of moments.
Your photo is brutally endearing.
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