It’s been a long time since I thought about those first few days with my daughter. Actually, that’s a lie. There’s not a day that goes by that I don’t think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.
It’s always peeking out, just below her curls.
I wonder what she’ll think of that, someday, when she realizes that she’s not quite like the other kids. I know there will come a day when she hates it, another when she accepts it, and another when she realizes just how grave a situation it was… and what a miracle it is that she is still around today.
I know enough, thanks to my nursing background, to know what an absolute miracle it is that she’s walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don’t thank her for showing me the way, for helping me find my light, and for using that light to help others.
She’s the reason we, this Motley Band, are here. She’s the sole reason that this site, which has helped so many, exists. Without her, I’d just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today’s media. I’d still be Your Aunt Becky, but I wouldn’t have done this. Any of this.
In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.
While I could sit here, raging against her birth defect – which has given me a wicked case of PTSD – I don’t. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.
Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.
The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.
In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.
Aunt Becky’s daughter, Amelia, is the sole reason that The Band exists. Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
She was born in September. It was hot. And in 12 weeks, we would be speaking a new language.
My baby was just 2 days old when we learned that our “perfect” world was not to be. My whole life I dreamed of motherhood. It’s what I wanted to do, more than anything. Be a good mom. Raise a family. Teach a little person about my faith.
Rewind to my college days – I was one of those students that changed majors more than once. First I was going to be a teacher; I majored in elementary education. Then after two summers directing a summer camp, I learned that wasn’t really for me. I wasn’t a fan of the parental drama.
Then I was an accounting major. I was going to be a CPA. Then I realized I needed more and ended up an accounting minor with a business administration major in both finance and marketing.
But none of that told me what I wanted to do with my life.
All I cared about was that someday I was going to get to be a mom.
I married my high school sweetheart. We’ve been together since 1992. We got married. Got jobs and got ready to have the “perfectly perfect normal life” that we’d always planned. God has a funny sense of humor sometimes.
And then almost 3 years after we got married, 11 years after we first met, we had Natalie.
And then in 2 days, our world was rocked.
Her bilirubin level of 22 just would not go down.
Our family doctor made the decision to send her to a bigger hospital in a bigger city. He told us that his ego was small enough that he knew that she could get better care and more answers there. The ambulance drove away, and we felt terribly alone. She was whisked away to a NICU and our baptism into a world of medicine was begun.
Our baptism was truly begun with a Baptism.
Natalie was taken to a NICU in a town an hour away from where she was born.
My baby sister Bridget was taken from the same hospital to an ICU just 21 years before, after she was born. She never returned home.
I know that was on my dad’s mind.
My baby sister was born with Transposition of the Great Vessels. She lived 7 days. She was operated on by a fantastic surgeon, who just happened to be the very same surgeon who would perform our daughter Natalie’s very first surgery, a cholangiogram.
The surgeon did his fellowship at Children’s Memorial in Chicago. This same place where Natalie would someday have her liver transplant.
So many coincidences…
Our NICU surgeon made the comment to us that is the title of this entry, “We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it…”
I don’t hold a single ounce of ill will toward the man. Natalie’s case confused everyone.
She was born with a gallbladder. Albeit a shriveled, ugly, non-working gallbladder. But a gallbladder, nonetheless. And that’s just not common in Biliary Atresia.
In “classic” biliary atresia, by the time most kids are born, their bile duct structure (gallbladder included) has shriveled up and is not working. But Natalie was born 5 weeks early, and it’s a progressive disease – meaning it gets worse as time goes by.
Back to my dad. He’d seen things end badly for his child. I know he had his grandbaby’s soul in mind when he told me that we needed to baptize her.
I am a Catholic.
New babies = Baptism is second nature for me. But the reality of this was too much to bear. I’d had the story of Bridget’s birth and death memorized. I was 4 when she died. Her death is my very first memory. Her death prepared me for my future role, of that I am now certain. But in that moment, I could not face it.
Here I was 2 days after the birth of my child.
I’d had pre-eclampsia. I was induced just two days before following 35 weeks of pregnancy. I was a swollen, puffy blob, having gained 30 pounds in the last month of my pregnancy alone. My husband said that the moment I gave birth to our daughter, my blood pressure had skyrocketed to 250/204. No joke. I was given magnesium to prevent a stroke or a seizure.
My mind was so fuzzy.
I was still in shock.
I wanted my “normal” life back!
I was in denial.
This wasn’t happening.
Why was my dad suggesting that we baptize my baby? Did he think she was going to die? I dug my heels in. (At least I tried to. I could only fit my fat feet into a chewed up pair of black sandals – that my German Shepherd had gotten ahold of.)
So my dad did the good dad thing. He did the responsible thing. He overruled me.
He called our dear friend, the priest. He had been the priest at our church when Jason and I met (we met at church, have I mentioned that?). In walked my dad and the priest, through the sliding NICU doors and over to Natalie’s bassinet. I watched it in slow motion. I remember it in slow motion. I don’t even think I have any pictures of the moment that is forever etched in my mind.
At the time of Natalie’s first surgeries, we had not created a website for our kid, Facebook was not around, and MySpace was a name I called my bedroom. What I am saying is that I did not document my thoughts and feelings at that time, the way that I do now. Not that you would have wanted me to. You see, for the first 3 weeks of Natalie’s life, we lived in our home and visited our baby in the NICU.
We did not know in the beginning that Biliary Atresia would be Natalie’s final diagnosis. She began her stay in the NICU under the UV lights, like any other jaundice case. We’d work on “normal” things, like trying to get her to eat. The first day it was 15 ml every 3 hours, then 20ml, then we finally worked up to a whopping 30 ml. I was encouraged, cheered on even, to keep breastfeeding. And so I did. It gave me a purpose. A sense of control.
And when you can’t control anything, you’ll control that one thing with everything you’ve got.
I took to it like a champ. Strike that. I took to pumping like a champion dairy cow. I focused on finding ways to increase my milk production levels. I found special teas marketed themselves as “Mother’s Milk” tea. My loving husband was my biggest advocate. We’d walk down a long hall, into some section of the hospital that was no longer in use, except for the rare nursing mother pumping session. There was a room with 3 old chairs, a sink, paper towels and soap (for keeping supplies clean) and outlet. Not much more, except for some posters donated by a La Leche League USA. I’d plug my Medela Pump into the wall, take a seat on the old metal chair that was missing chunks of vinyl on the seat, and watch the milk rise in the bottles, feeling victorious as the ounces would climb higher and higher, knowing this was for my girl. The aches I felt, sitting hunched over, were worth it. This was for Natalie. This was making her stronger, this I could do.
After a few days, they did a full blood work-up. Her GGT level was around 1700 (normal is 5 – 55), letting the doctors know that something else was wrong.
They’d take her for an ultrasound. “Inconclusive.” She was born with a gallbladder, after all, and was stumping them.
After this happened 3 times, she had a HIDA scan, and then an open cholangiogram and also a biopsy, all on the day that she turned 2 weeks old.
That’s when our surgeon met with us and drew on a paper towel what we were looking at.
He had opened Natalie up, injected dye, and then tilted the table to watch the flow of the dye. And that’s when he said that he hoped that this wasn’t Biliary Atresia. He and the Pediatric GI attending to us in the NICU, both referred us to a wonderful team of doctors at Children’s Memorial in Chicago. And in the meantime, the biopsy slides were sent to Mayo clinic.
Mayo’s answer came back “Biliary Atresia.” But all other local doctors disagreed. So we got the slides back and took them with us to Children’s Memorial.
When we arrived in Chicago, it was like no place we’d ever been. There were bright colors everywhere. There were multiple waiting rooms with lively fish swimming in tanks. We were escorted to an examination room on the first floor. We thought that we must have been in the wrong place. There were no plaques or diplomas oh the wall. We met two doctors and told them we’d hear the term “breastfeeding jaundice.” The awesome doc, the head of the pediatric gastroenterology at the hospital, gave me a look like I’d just crawled out of a cave. “That is a myth. We’ve disproved it.” OK, I thought. Not going down THAT road with him. I had just had my first lecture by a genius, and I wasn’t a fan of lectures. But it let me know that we were in the right place. They knew their stuff. And above all else, they forbid me to feel guilty.
The fellow (also a doctor, so many levels of hierarchy at the hospital) took the slides and reviewed them. He asked the genius doctor to review them. Their first review said that she may have Cystic Fibrosis. They said it just did not present like “typical biliary atresia.” And so, sweat tests were done = “negative” was the answer. Genetic tests were sent away, and those took 6 weeks to get back. 6 long weeks of desperate waiting. The results came back negative.
After we had left the NICU, we waited for the other shoe to drop. We were still waiting. We waited for the bad news that we knew would come. Every inconclusive answer left me feeling more and more frantic. Genius doctor had told us that for a Kasai Procedure, the procedure to treat Biliary Atresia, to be most successful it must be done by the time the child is 12 weeks old.
The clock kept ticking.
Just a few days later we returned to Children’s and during a follow-up exam, Natalie happened to have a dirty diaper. Genius doctor took one look at it and re-diagnosed her with Biliary Atresia.
Who knew the answer was in the poop?
She was admitted and had another biopsy; it was again inconclusive. The kid is consistent. She then had another cholangiogram, this time a percutaneous type, which was then followed by a Kasai Operation on December 19 of that year. She was 11 weeks old. We’d gotten her surgery in by the time she turned 12 weeks.
Her new surgeon (also a genius), called hers a case of “correctable Biliary Atresia.” We’d learn later that things are not always what they seem and rarely are they as simple sounding as something called “correctable.” But, for the moment, we had an answer.
She got to come home on Christmas Eve.
Little would we know that within a year she would be listed for a liver transplant. I could not have guessed at this point that when she turned 17 months old that I would be giving part of my life to her.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.