By Brook Scalzo
cleft
\ ˈkleft \
Noun
: a space or opening made by or as if by splitting
Adjective
: split, divided, or partially divided into two
The ultrasound technician said, “It’s going to be okay,” but I didn’t hear her. I could only hear the crinkling of the paper beneath me. Scott held my hand. I was bare, exposed, and vulnerable, as strangers stared at me, awaiting a response. I knew. I knew even before she told me. I saw it seconds before the laughter turned into an awkward silence while more practitioners entered the room.
A tiny black line on the ultrasound. A cleft.
I was twenty weeks pregnant and at my required anatomy scan, as I was of advanced maternal age and complications with pregnancy were more likely. I had gone into this appointment optimistic. And while the pregnancy had been difficult on me, genetic testing and other resources had led me to believe I was carrying a healthy baby.
The specialist started rambling to fill the silence. “It really is so different these days. It’s just a quick surgery a few days after birth,” she said, her words trailing off. “It’s just cosmetic.”
Lies.
Scott smiled politely and nodded along in hopeful optimism. I knew better. I knew too much. At that moment, a decade of pediatric nursing experience and hundreds of textbook pages flooded my brain. Pain, hearing loss, syndromes, surgeries, orthodontics, reflux, aspiration, heart defects, self-esteem, developmental disabilities and feeding tubes all swam in my mind around one little word: cleft.
I immediately decided to bypass the first stage of grief and went straight to anger. No denial for me; I was plagued with too much information. So, I decided to be appalled. I was appalled about the process, appalled at the lies, and appalled that I didn’t even get to pull my pants up before they lightheartedly delivered this earth-shattering news.
Like a child with a broken toy, I was desolate, and I wanted my mom. I needed her to fix it. Later, she stood over me, 20 weeks pregnant crying in the bathtub, and matter-of-factly asked, “Brook, do you want this baby?”
I paused longer than I am proud to admit. “Yes,” I said.
“Okay,” she said, “then, enough of this.”
I’m not sure what I felt as she helped me out of the tub.
It’s of no real consequence. Because it wasn’t about me anymore.
I was a mom.
Statistics. They’re so boring when you are not one of them. Prevalence of cleft lip and palate is “common,” with more than 200,000 cases each year in the United States alone. So, we should all be aware, educated, and prepared, right? Not even close. I learned in an instant the line between nurse and mother should never need to be crossed, but there I was, research papers covering my bed and terrified to read them. Instead, I shuffled the pages together and shoved them in a drawer.
I wasn’t ready.
Arkansas Children’s Hospital, my home for 10 years as a nurse, now wore a new face. My phone rang early the next day. “I saw your name come across my desk and I wanted to reach out immediately to confirm an appointment with the Cleft Team,” said the voice on the other side. It was the Ear, Nose, and Throat specialty nurse who I had worked with on the COVID Hotline just a few months prior. I had an appointment with the Cleft Team at the hospital the very next day. The place where I had cared for countless patients was now ready to care for me.
But I still wasn’t ready.
The familiar halls that I could navigate in the dark suddenly felt like a maze. The familiar smiles were wasted. I wasn’t home anymore. I was lost, and it would take a team of doctors, nurses, friends, and my family to help me find my way back. Vulnerability. That was the difference. Stripped of my badge and scrubs; I was stripped of my superpowers. The role reversal from nurse to patient was debilitating. My nursing philosophy and passion for my career forever changed that day. The greatest honor I will ever know is to be trusted with someone’s child, and now I would now have to do what thousands of parents had done for me: trust them.
My mom and I were led to a cramped room with a tiny table that held a thick binder. A welcoming, masked face greeted us and began to review the contents of the book. I do not remember a single word that was said. I sat staring at the corner while a friendly, young voice danced around my mother’s harsher, but polite tones. I missed it. I missed the whole thing. In retrospect, I should’ve waited or asked for a do-over. Because, for the life of me, I cannot even remember meeting one of the most influential men in my daughter’s young life, Dr. Adam Johnson.
Afterward, depression hit me hard, just as the stages of grief predicted. I lived in a numb daze for weeks. Tears filled my eyes with even a glance at my bump. I felt guilt and shame. What had I done? How had I already messed this up? Bilateral cleft lip and palate, but what else?
Wait. Watch. Hope. Prepare.
My closest friends, family and colleges were extremely supportive, and the condolences kept coming:
“It’s amazing what they can do.”
“It’s just one little surgery.”
“She won’t even remember.”
“God chose you, because he knew you could do it.”
All were well-intentioned, supportive, and all filled with love, but I just needed to someone to say, “This sucks.” I needed someone to share my pain, hurt and fear with me. My mom and sister began researching for the best plastic surgeons in the country while I laid in a dark room. They worked tirelessly to navigate and pave a way for me, but I just couldn’t bring myself to even look at a photo of a cleft baby.
I. Just. Wasn’t. Ready.
There were two very long weeks until the next “big day”. The hospital’s specialists would perform a fetal echo to rule out any heart defects, which are common in babies with cleft. That word again: “common.” Nothing about this experience felt common. I went to the appointment alone. Walking through the halls of Children’s without my cotton armor and checking-in at the Heart Station desk. It was the same desk at which I sat during nursing school, registering patients for the Cardiology Clinic. A familiar face checked me in with a worried look in her eyes, but she said nothing of my circumstances. We exchanged pleasantries and I took a seat.
A new stage of grief began in that waiting room, bargaining. I begged and pleaded silently and fervently for this baby’s heart to be okay. “If this one thing can be okay,” I promised myself, “then I can handle everything else. I will stop moping and prepare to advocate for this child. Please, let it be okay.” I watched mothers tend to their children in wheelchairs and on ventilators – something so common in my career – suddenly hitting too close to home. I was called back quickly by more familiar faces who shifted from smiles to serious expressions when they realized I was the patient.
Once again, I sat in the dim, cold room and hiked up my dress as the ultrasound tech covered my legs with a sheet, keeping my stomach exposed. The test took eight minutes, but it could have just as easily been eight hours. She looked up from her screen. “Okay! That’s the fastest one I have ever done!” As she closed the door, I could hear her telling her collogues of her eight-minute speed-run as they cheered, while I sat in the dark, waiting. A few minutes later, the doctor entered with a grin on his face, turned on the light, and said “Her heart looks great.” My negotiations had paid off! My prayers answered. This one shift, this one piece of news was enough to get me on to acceptance.
I was ready.
I started slowly. I opened the binder I had been given weeks ago. Business cards filled the first sheet. Adam Johnson, M.D., Ph.D., Assistant Professor at the University of Arkansas for Medical Sciences Department of Pediatrics and Sarah Valdez, BSN, RN, CPN, ENT, specialty nurse. They would become my guiding lights throughout this journey. Then came example before-and-after surgery photos, with babies as cute with clefts as they were when repaired. I smiled.
The next section of the binder was from 2005. A big red flag. Was this the best information that just happened to be old or was there no current literature? It turns out there is plenty of slow-progressing research, but how would a parent without a master’s degree in nursing know how to find it or what it meant? The pages were filled with glossaries, diagrams, and medical terminology, showing the intricacies of the nose, mouth, and palate. It briefly covered feeding cleft-affected babies, the specialists that would make up our Cleft Team, surgery schedules, hearing and speech development, psychological impacts, and financial information. All information I would eventually study and memorize, but that day I only highlighted three sentences.
“Be strong, for it is from you that your child with draw strength.”
“You must instill self-esteem and project a bright future for your child.”
“Above all else, be kind and patient with yourself…You will begin to see beyond the cleft to the love, the sense of fun and mischief, the wonder and sensitivity, and all the traits that define the unique character of your child.”
I smiled again.
After a week or two I was able to memorize the binder of information. I pulled the stack of papers out of the drawer and began planning to meet my baby’s special needs head-on.
Scott, her father, on the other hand, is not in the medical profession and it was very hard to find up-to-date literature that wasn’t quantitative medical research. If I could barely understand this information, how were other parents supposed to? Every hospital and every surgeon had a different philosophy and different rules. It was difficult to find a gold-standard of care, much less explain what the future held to my partner and family.
So, I turned to social media. The Facebook Cleft Groups welcomed us with open arms. We learned more from other parents than we could ever learn from reading. I caution you, however, to find a Cleft Team that you trust and use social media only for guidance and support, not medical advice. The same goes for this book. Every cleft-affected child is different, and you will need to find what works for you and your team with evidence-based guidance, trial and error and advocacy. This book will not be filled with the strongest research and evidence-based practices. It is my experience as a nurse and cleft mom, but it cannot take the place of medical recommendations. Cleft parents become fierce advocates with strong opinions, ones that may very easily contrast with mine. I hope it serves as a guide, fills you with hope and shows you that you can feel your feelings.
You are allowed to struggle and still be the strong parent your child needs.
A dark introduction to what will hopefully be a positive and inspiring book? Maybe, but it needs to be written. You need to know that it is truly okay to not be okay. You need to grieve the loss of a baby that will not face these challenges. Be productive and aware throughout your grief though, that you are on a timeline now. Work hard to get to acceptance before you meet your baby, or, even better, do it sooner so you can enjoy your pregnancy. I couldn’t do this. Not completely. Not until I met Penny.
I imagine you might also be in a stage of grief if you sought out this book. That is why I thought sharing my experiences could help you understand that you are not alone in yours. You will soon face harder challenges than you could have anticipated, but you will also have a beautiful, happy, playful, inquisitive baby who has a wide smile that will melt you.
Knowing what I know now, what we have been through, I wouldn’t change a thing. I will teach her that being comfortable with yourself is the most attractive thing in the world and allow her to celebrate her scars, uniqueness, and victories, as well as her challenges and failures. I would take nothing from her, except the pain.
Brook Scalzo, M.N.Sc., BFA, RN, CPN, is a Clinical Instructor in the College of Nursing.