Scarlett’s Heart
As we stepped out of the elevator to the Neonatal Intensive Care Unit, I couldn’t help but stare at the badge that was given to me to allow me into the unit. It had the number 12, with “ Mom” on it in pink lettering with flowers all around it. Pinning it to my hospital gown as we stepped towards the giant metal doors put the lump deeper in my throat. I heard my husband hit the buzzer and tell the attendant we were the parents of 12.
When we walked through the door, it instantly got colder. The room was filled with the sound of beeping monitors. We walked down the hallway until we came upon room 12. Outside the room was an industrial sink where we were to scrub our hands clean before entering the room. I ran my hands under the warm water trying to mentally prepare myself for what I was about to see. I was about to walk into a room and see my daughter for the first time but not the way I imagined for nine months. Twenty-four hours after her birth and I still couldn’t process what had happened. I was always told she was healthy. She was born a week after her due date. How did we get here? Before I could finish my thought. my husband, Austin, ran his warm hand up my back, “ Sweetheart
your hands are clean” ,in a soft tone. I looked at him and nodded, knowing I must have lost track of time. Before entering her room the nurse made me aware of how my daughter was going to look. She told me about the tube down her throat breathing for her, about the wires she had on her connecting her to a monitor, and the multiple IV’s she had in both arms. While she was speaking, I kept my eyes closed, trying to digest everything she was saying, reminding myself I had seen many patients like this before. I took a sharp deep breath as I stepped into her room. Somehow it was even colder than the hallway. My arms covered in goosebumps within seconds.
My eyes filled with tears when I saw her. Not the tears of joy I was told I would have meeting my daughter, Scarlett, for the first time. It was tears of fear. Tears of pain. I slid my shaking hand into the incubator and placed it on hers. Her skin was warm and soft like velvet. Her dark brown hair, that came up into a mini Mohawk, was soft and silky. Her tiny fingers quickly curled around mine as she felt it touch her hand. Her toes were copied and pasted from Austin’s feet and shrunk down to fit on hers. They too curled when I touched them. I sat there for what felt like hours just examining her without saying a word. How could something so small be hooked up to so many big tubes and wires? Half of them were bigger than she. Finally I lifted my gaze off of her and onto the nurse who was changing out her fluids in her IV. She was small and petite. Her blonde curly hair pulled back into a loose ponytail with a pink headband with buttons that held her face mask off her ears.“ Is she in any pain?” My voice barely shook out. “ We have her pain managed very well”, she said back at me. Because of her face mask I couldn’t see a smile, but her cheeks raised and her eyes spoke of a smile. I nodded and placed my head against Austin. His breath was shallow and his
chest was hard, which allowed me to know exactly what he was feeling. Fear. Little did we know, the fear of the unknown was better than what was to come.
Throughout the day, many doctors came into the room. All explaining what tests they have done, what they plan to do, and what they knew so far. Which was nothing. She wasn’t premature, her lungs were developed, there wasn’t any reason why she shouldn’t be able to breathe on her own. There were no signs of infection. In every chest X-ray there showed no edema or fluid. “ The only thing that might be of concern is she has a heart murmur”, stated the lead doctor on her case. He was tall and narrow.
With his dark hair pushed to one side and his skin sun kissed like he just came back from a nice tropical vacation, his voice was smooth and soothing. “ A lot of babies are born with a murmur, they resolve on their own and aren’t an issue” he said confidently. “ I’ll run an echo to be sure, but I’m not convinced it’s the problem”, he said and then stepped out of the room. At the time, I used those words as comfort. Now they’re words that play over and over in my head. That soft, smooth, and comforting voice, became a voice I couldn’t stand. They weren’t sure what was going on but her heart wasn’t a concern. I told myself nothing was wrong with her. I told myself she was just tired from the long thirty-six hour labor. I told myself she needed time to rest and that she’d be fine. Deep down I was terrified those thoughts were denial, and something would be wrong.
When a man came into the room to do the echocardiogram, Austin and I decided to step out and grab lunch. We both pressed our hands against the cool plastic of the incubator and smiled at each other. While we didn’t say a word, I knew we were thinking the same thing, she was perfect. Even though she was hooked up to so many wires,
you could barely see her face, you could tell she was beautiful. Austin placed his hand on my cheek and rubbed his thumb up and down my face. He always does this to comfort me and to tell me everything will be alright, it is my favorite thing he does. He never has to say a word when doing it. The simple act gives me comfort like the ocean’s waves hitting the shore.
When we returned, the environment of the NICU changed. As we walked through the double doors, we were immediately met by a nurse asking if we received a call from the cardiologist. We looked at each other with a puzzled face. “ No”, Austin stated with a firm, hard voice. “ Okay!”, the nurse said in a chirper but concerning voice, “ He probably will meet you in your daughter’s room”, she said and left us to wash our hands. After we finished washing our hands another nurse asked the same question.
Now, every red flag in my head was standing up along with the hair on the back of my neck. Something was wrong and I could feel it everywhere in my body. Before we could settle back in her room, a man walked in. He was tall and string bean like. His arms dangled off his body like they were barely hanging on to his body and they swayed when he walked. His hair, jet black with tiny sprinkles of grey throughout it, was gelled nicely to one side. He had long fingers that clasped together as he sat down next to me.
“ Hello!”, his voice was high and full of excitement, “ My name is Dr. A and I’m the Pediatric Cardiologist!”. I couldn’t find words to greet him with, all I could do was nod as my heart raced. The words he said next make my whole body spin as if I just got off the Teacup ride at Disneyland. “ After reviewing her echo, I unfortunately am here to tell you Scarlett has Congenital Heart Disease”, his voice seemed to be placed in slow motion. Austin and I looked at one another, as tears filled his eyes, the tall man continued. “ It’s
a rare form called Tetralogy of Fallot, meaning there are four different defects in the heart”, as he spoke the room filled with loud sobs, “ She’s going to need many open-heart surgeries and cardiac care for the rest of her life”. When he finished that
sentence I fell into Austin’s arms. My chest tightened as my cries grew louder. Austin’s arms closed around me and I felt his tears hit the top of my head. Dr. A continued, “ Mom there’s nothing you did to cause this, these things just happen”. Austin and I continued to cry as he finished up, “ Well, I’ll pop in tomorrow to answer any questions and further discuss this process”. He stood and left the room as quickly as he came in.
The room grew quiet as the sound of sobs left the air. I kept my face pressed into Austin’s chest because, maybe if I kept it there, all of this would disappear. In the silence, Dr. A’s words replayed on a loop that lingered and haunted my thoughts. I hated him and the thoughts he put inside my head. One thought in particular shook me to my core, forced my body into shock, and stopped my world ever since. Are we going to lose our daughter? While I was still wrapped in Austin’s arms, I fell to my knees at the thought of losing our baby girl, and the once quiet room filled with the sound of sobs and despair all over again. As I sob uncontrollably, I couldn’t stop thinking about the hatred I had for this man. How could he come in, give us this kind of news, and leave us with nothing but pain? There was no one to blame for my daughter’s heart disease. Hating him and every doctor in that hospital was all I had.
Six long months have gone by now. Scarlett has had: four hospitalizations, ten Covid-19 nasal swabs, countless IV’s, Chest X-rays, Echocardiograms, and doctors appointments. One Catheter Procedure where they performed an Angioplasty with Balloon Catheterization, and an Open-Heart Surgery to correct Tetralogy of Fallot.
Which entailed having her chest cracked open, being placed on a Heart and Lung Machine, and a Ventilator, for several days. Today she is three months post-operation and she is a pure miracle. She is healthy, strong, and beautiful. Her blue eyes clear like the Mediterranean Sea. She has strawberry blonde hair that gently lays to one side and curls at the ends. A midline scar, that runs down just above her belly, tells the story of her battles she has faced. She’s full of laughter and joy despite all the pain she’s gone through. Her resilience gives me strength for the future of battles we have in front of us. As for Dr. A, he’s the angel we needed. Every step of this journey so far he’s been by our side advocating for Scarlett and making sure she’s had the very best care. He’s also made sure Austin and I have made it through in one piece. We are forever grateful to have such an amazing, brilliant, and caring man for a doctor to our girl.