Even now, nine years after the fact, I struggle about where to post this. I’ve been told so many times that I had a miscarriage, that Maggie wasn’t even a viable baby.
She was my baby. She was my daughter. I held her in my arms, and I gave her a name.
I have a daughter.
Some people I know are surprised to hear this, since I only talk about my sons, Big and Little G. I don’t talk a lot about the fact that there were pregnancies #4 and 5.
I’m going to pull a lot of this from a story I posted at the Preeclampsia Foundation back in 2002. The women in the forums there saved my sanity, and I love them for it.
About 17 weeks into my second pregnancy (my first ended with a miscarriage at 14 weeks), I experienced a day where I threw up all day long. I hadn’t had morning sickness at all, so I was a little concerned, but Car (my husband) and I assumed I had a 24-hour bug. The next day I didn’t throw up, but I simply didn’t feel well. I had a general feeling of unwellness from then on, but nothing specific.
At about 17.5 weeks, the pain started. At first I assumed the pain, which was located just below my sternum, was heartburn. I’d never had heartburn, but I couldn’t imagine what else the stabbing pain could be, and everyone knows that pregnant women get terrible heartburn. The pain got progressively worse until I could no longer work. I asked a few people if this was really what heartburn was like, and they assured me that pregnancy heartburn could be really bad. I took the maximum amount of antacids allowed, but nothing helped.
I had my usual appointment with my perinatologist on a Wednesday, and I mentioned the pain. He suggested Pepcid AC. My urine showed only a trace of protein, so there was no cause for concern, despite the fact that I had to have a friend drive me to my appointment because the pain was so intense.
That evening, as I curled up in a ball on the couch and sobbed, Car decided I needed to go to the emergency room. I refused, positive the ER personnel would laugh at the pregnant woman who couldn’t handle simple heartburn. We finally struck a compromise–I would page my local OB and if she thought I needed to go to the ER, I would. When my doctor returned the page, I was crying too hard to speak with her, so my husband filled her in. She also thought it was most likely heartburn, but said if the pain was bad enough that I couldn’t talk on the phone, the ER wouldn’t be a bad idea.
The first thing the doctor at the ER did was give me something he called a “GI Cocktail.” It’s a lovely little drink that numbs your entire digestive tract down to your stomach, and will apparently subdue even the worst heartburn. It made my tongue and throat numb, but did nothing for the pain. The doctor said, “I don’t know what’s wrong with you, but it’s not heartburn.” They gave me a shot of Demerol for the pain and ran several tests (blood work, ultrasound, CT scan). After about 4 hours in the ER, all they could come up with was, “We can’t find anything wrong except for some elevated liver enzymes. We think it’s probably your gallbladder. Call your doctor in the morning.” They discharged me and sent me home.
The next day I called my doctor and told her I had elevated liver enzymes and the ER doctor thought I had something wrong with my gallbladder. My wonderful doctor, whom I credit with saving my life, said, “That doesn’t sound right. Let me makes some calls and call you back.” Within 30 minutes, she called me back and told me to go to the hospital for further testing.
From that point on, things become a blur. I was admitted to the hospital on Thursday and put on a morphine drip for pain. My liver enzymes skyrocketed, my platelets dropped. We were told that the best-case scenario was hepatitis. My red blood cells started to self-destruct and my kidneys began to shut down. My brother flew out from Minnesota in case he had to say goodbye. Every possible liver disease was tested for and ruled out between Thursday and Saturday, when the doctors finally settled on the final diagnosis–HELLP Syndrome. They told us that to save my life we would need to terminate the pregnancy. I begged them to prolong the pregnancy long enough to save my child. The doctor told me, “I don’t think you understand. It’s not an either/or situation. If we don’t end the pregnancy, both you AND your baby will die.”
I was 19 weeks pregnant.
On Saturday night a doctor started the process of manual dilation (which is every bit as painful as it sounds), and on Sunday I delivered a perfectly formed little girl, Margaret Marie. Maggie weighed 3.88 ounces and never took a breath on this earth. I held her in my arms, counted her fingers and toes, and decided she looked like my husband, who was weeping by my side.
About six months after Maggie was born, we decided to try again. I miscarried at six weeks. I told myself , “At least it happened early,” but I was still devastated.
The first time I saw a brain, a real brain, suspended in some greenish liquid at the front of my gross anatomy lab, I stood there, staring at it for a good long while. I was long past being disgusted by the organs of the human body, and seeing the folds of the creamy white tissue struck me only with a sense of wonder. This was it, right there: all that you were, all that you thought, all that made you you was right there in that innocuous looking organ.
Really, it could have been a football for as glamorous as it looked.
But to know how it worked, studying the nuances of neurology, that is poetry. All of the mysteries that we still do not know about how the synapses fire to make one person want to maim and dismember and one person want to paint the Sistine Chapel, that is beauty. The smooth folds folding seamlessly into each other made up separate and distinct parts of the brain and instinctively I rattled them off in my head as I examined the brain in the jar: the cerebral cortex, responsible for how we are feeling, our emotions. Those that make someone laugh or weep, smile or scream, right there.
The parietal lobe, which is how we use all of our senses at once to make decisions, the back of the head responsible for sight, the very sense I was using to examine the brain I was so enthralled by. Without it, I wouldn’t be able to drive a car, see the deep brown of my son’s eyes, the bright red of the fall leaves outside of the classroom. One by one, I observed all of these structures on that brain, carefully preserved in formalin in a jar labeled ABBY NORMAL.
How could something that looked like a Nerf ball be so mystifying and so shockingly resplendent in it’s simplicity at the same time? Something that made each of us who we are should have looked unique, special, like a jewel and somehow, the more brains I saw, the more I realized that they all looked pretty much the same.
Maybe it’s what we do with those hunks of white matter that contains the beauty, because with the exception of the cerebellum (which is surprisingly beautiful), it’s a highly understated organ, especially when compared to something flashy like the kidneys.
When my daughter was born with part of her brain hanging jauntily out of the back of her head, the doctors pretty much shrugged their shoulders when we asked what that meant about her future. While she showed no signs of neurological damage, she could be profoundly normal or profoundly retarded, it simply wasn’t something that could be determined by a blood test or an MRI.
Up until she was a year old, Amelia was followed by Early Intervention, who came every couple of months, tested her, declared her normal and left. When she turned a year, I figured it was probably time to let them close the case on her for now and promise to make a call back if something changed. I know the drill with special needs kids well enough, and her medical diagnosis is an immediate qualifier for assistance.
It’s taken me until now to realize that there is actually something wrong with her beautiful brain.
Amelia has no words.
She has no words.
No glorious words, the very thing that I make my (pathetic) living from, she has none. I’ve always derived so much happiness in putting together combination of words to titillate, horrify, or move people, and she has not one word.
She’s had words before, they’ve slipped out of her mouth for a couple of days until it appears that she forgets them and goes back to shrieking and grunting to get her point across. In many ways, this terrifies me more than seeing my mute autistic son did, because it seems as though she has words, then loses them again.
It’s time to call the specialists back in and help my daughter find her words.
For good, this time.
I have a lot of delicious combinations to teach her.
When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
After about an hour, the nurse came to the waiting room where we were sitting, having NO idea whatsoever what was going on… thinking our baby just had a cold or something. She said ever-so-calmly but with great concern, “We have him stabilized, but you have a VERY sick little boy. He was not breathing when we got him from you.” And then we were told we could see him shortly.
***************
My baby was THAT sick? How could that be? Twenty-four hours earlier he was pink and rosy and smell-goody and perfect? Twelve hours ago he acted like he didn’t feel well, but NOT BREATHING? How did I not know that? I’m his mother. I’m supposed to know these things.
Charlie was born 20 days earlier than this-happy, healthy and alive. From the moment he was born, he was wise. People commented on that in the hospital even. He was just alert. He had big brown eyes and a look in them that would melt your heart. In hindsight, he wasn’t meant for worldly things. He was meant to be a protector… and angel.
Back to the hospital. Jason and I went to see him when we were finally allowed back into the PICU. We were gently led to the bed where part of my soul still lives. My six pound baby had ten pounds of tubes and wires and things keeping him alive. I remember vividly not being able to breathe but still not realizing the severity of the situation.
We held vigil at the hospital for the next 3 days. In that time we were told that he had contracted late-onset Group B Strep which had caused meningitis and sepsis. They did a spinal tap which showed his spinal fluid looked like Jell-O instead of water and a CT scan showed most every part of his brain had had massive strokes, including his brain stem.
At last we were taken to the “OH SH*T” room where we were told our baby wasn’t going to live. He wasn’t going to have a first birthday or a first day of kindergarten, would never play t-ball or football or get a high school diploma. He would never meet the girl of his dreams and have beautiful babies and name them after his wonderful parents. In that tiny, dark room, our hopes and dreams were shattered.
On Friday the 13th, the most unnatural day to do this, we made the decision to turn off all support to our pride and joy. But we wanted to do it on our own time. And we weren’t ready right then.
Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last seven years.
At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.
After everyone left the room, we were left with our son. Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. In the next 43 minutes there were tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.
Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddy’s with breakfast and homemade cards and fun on Father’s Day.
We woke up to the truth. That our lives would never be the same.
Your baby got sick. Your baby has lasting health problems. Your baby died. What’s next? Who do I blame? Surely somebody is to blame, right?
Not always. *
Our son Charlie died from late-onset Group B Strep in June of 2003. He was 24 days old. The doctors said there was a 50/50 chance that he got it from labor (me) or that he just got it from “life”. So my husband and I made the conscious choice to not dwell on or even think about who or what was to blame.
That’s crazy, you say. We could sue somebody and get lots of money if they were found to be at fault.
OR
On the other hand, I could blame myself daily and end up sinking into an even deeper depression and spending the rest of my life beating myself up for carrying GBS and killing my child.
No amount of money would bring my baby back. If there were a specific amount, I would beg, borrow, steal, cheat and maybe even kill to get enough money to bring him back. I would sue whomever and whatever I could if they would bring me back my sweet, pink, smell-goody, bright-eyed Charlie.
But that isn’t going to happen. Ever. So I have made peace with the fact that no negligence was done, by myself or my husband or any medical staff, and have told that part of my grief to take a hike. I’m not thinking about it anymore.
*Exception: If there was gross negligence on the part of a caregiver, doctor or hospital, and you have the resources and truly believe you have a case, then going after compensation may be okay. I’m not attorney, but I do know it won’t bring your child back or make your child whole again.
