‘The doctor said he tested positive.’ I stared at my baby’s sleeping form with guilt.’: New mom raises awareness for sickle cell anemia

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“My labor lasted for what felt like an eternity. In the real world, it was 26 hours, but when you’re in mind-numbing pain, who can tell the difference! My mom hadn’t stopped pacing the room all night and day as we counted down to baby time. My husband chose to roam the halls while trying to contain his panic. He went to the car to get something and went missing for 3 hours. When he reappeared, he told us shyly, due to the stress of it all, he’d fallen asleep in the car raced back to the room because he thought he’d missed the birth of our baby.

Once he realized he hadn’t he missed the birth, he doubled over from nausea, crawled into the couch, and almost admitted himself to the ER. By the time I’d finished staring daggers into the side of his head, he’d forced down three cans of ginger ale, gotten some serious ‘get it together’ spiritual encouragement from my mom, and was ready to greet our baby. After going over my birth plan, I was sure I was prepared… until I wasn’t. At the last minute, my doctor urged me to take an epidural, should I need emergency surgery to only realize some time later, the pain medication didn’t work as well as they’d hoped. I recall the tense stares in the room when we were told the doctors would have to use forceps or give me a C-section after 26 hours of laboring.

Given the alternatives, I did just the opposite and pushed with every ounce of strength I had left. Gabriel was born at 9:45 p.m., weighing a whopping 8 pounds and 13 ounces. His nana was the first to hold him. My whole family flew from across the country to be there for his birth and alternate their support for us while I recovered. We planned for 2 weeks, thinking we’d be leaving the hospital in 24 to 48 hours like all the other new moms I’d seen come and go. Instead, we found ourselves inundated with nurses, tests, and retests. Our nurses whispered they didn’t seem necessary, while our doctor assured us they were.

Courtesy of Jessica Brown

The newness of it all had us on edge, my husband trailed behind Gabriel and held him for every blood test, making sure to keep an eye on him, because like many new moms, I held on to the irrational, almost laughable, fear fueled by my bingeing of Lifetime movies somebody would take my baby or switch him. After 2 days of tests, the doctor on duty arrived to inform me they were not releasing Gabriel until she approved his result. I felt my frustration mounting. Before I could respond, my sister stepped in, and gave our doctor the, ‘YAS, big sis. I am low-key a lawyer and we ARE NOT leaving without my nephew’ shakedown

Although it gave me a little pleasure to see our doctor leave, I knew we still had to figure out how we could afford to stay another night. I felt the tears, but I forced them back. After a stressful delivery and days of no sleep, I refused to break down. Our nursing team was spectacular. We all still joke about our nurse named Jenny and how Gabe would scream any time she walked into the room (she came in most times to prick his heels for his blood draw, and she ended up helping us arrange to stay in our room until his release 3 days later). Less than 24 hours later, we were at our family pediatrician for his newborn visit.

Courtesy of Jessica Brown

After days of tests, and the usual lack of sleep that comes with 2-hour feeds and cluster-feeding of a new baby, Gabe had lost weight in the hospital. No matter how many times I tried to explain the irregular testing schedule, the lack of sleep, and his bruised heels from all the blood draws, his pediatrician just scheduled more appointments to follow up on results of the hospital. For the next 3 days, he ate, slept, and cried in peace, free from the poking of needles. When we went for our weight check, his doctor was shocked by his progress; he had gained 6 ounces in 3 days and was out of the danger zone for his weight.

There was a finally a light at the end of this exhausting first week. Finally, I let out the breath I hadn’t realized I’d been holding. With our certified clean bill of health, we all climbed into bed that afternoon, exhausted but elated. I already called our family on the way home to tell them the great news. For the first time in weeks, I planned to sleep with no extra worry. Then the phone rang. I heard my husband mumbling on the phone half asleep and dismissed it as something unimportant. It was when I heard the doctor’s name a pit formed in my stomach and I jumped out of my sleep.

Courtesy of Jessica Brown

Only after he hung up did he look at me with confusion and say groggily, ‘The doctor said he tested positive for something called sickle cell?’ The feeling of despair and loss spread through my body faster than I care to admit, tears immediately sprung to my eyes as I choked back the ugly sobbing I knew was clawing its way to my throat. I looked down at my baby and felt the weight of the past few days crashing in on me. He was perfect, and he didn’t deserve this. As I looked at the confusion in my husband’s eyes and saw it change to fear as he struggled to understand why I was crying, he snapped out of his groggy demeanor in an instant as he hung up the phone to ask, ‘What did she mean? What’s wrong? What is sickle cell anemia?’

‘Are you sure that’s what she said?’ I was in disbelief. Distant, once-lost memories of my mother’s childhood stories, lamenting the pain and hospitalizations of her friend who was a ‘Sickler’ forced its way into my thoughts. I could only stare at my baby’s sleeping form and immediately feel guilt. In those stories, my mom told she had said she was a trait carrier, but the doctors said none of us kids were. I knew enough then to know it was genetic, but I thought it was a death sentence. Somehow, I’d unknowingly given him something that would hurt him, maybe even cause him pain.

Courtesy of Jessica Brown

I guess at some point I started to cry, we both did, because it was my sister who had to come in and calm us both from our blubbering, and it was my mom who called us later that day and comforted us, assuring, ‘He would be okay, God had a plan.’ This was the first and last time that I cried because of my son’s diagnosis. After allowing for a few moments of self-pity, we hit the ground running. The explanations the hematologists and pediatricians gave us has us constantly thinking our baby boy was going to erupt in an unseen pain crisis episode at any moment. We were overly cautious, we prayed, we Googled constantly. There always seemed to be a cloud of worry, if Gabe was too cold, or too hot, or crying for too long.

We didn’t know if he was in pain or just being a newborn baby. ‘Use precautions’ was translated to worry in our first-time parent dictionary. We researched and read everything we could find on the subject. I only realized my mistake on a routine visit to our hematologist. Gabriel’s tests came back with better results than our previous 2-month checkup. We were relieved and celebrated momentarily by exchanging unsure glances. I expected the doctor to smile, to congratulate us, or alter his treatment to reflect his progress. Instead, there was silence. While writing notes, she told us he would be starting on a new medication and once he began taking this medicine, he would be on it for the remainder of his life.

Courtesy of Jessica Brown

It was like an invisible punch to the gut. I deflated like a balloon with a slow leak. After 8 shorts months, she was asking me to decide on a plan for the rest of his life… Up to this point, I’d felt dependent on my medical team; the onset of COVID-19 left us isolated from other members of the sickle cell and beta-thalassemia community. Nothing like this had happened in either one of our families before, so we were in uncharted territory. We hadn’t had the chance to meet or speak to any other parents. In the moment, I asked myself two questions: Whose report was I going to believe? Was my faith stronger than the intimidation, dependency, and fear?

Despite the potential problem list the doctors handed over to me and with a grim diagnosis and quality of life being the only available option, I knew without a doubt the only hope I had left was in my foundation of faith and family. I knew everything in life had to have happened for a reason, and sometimes the hardest lessons come to create the pressure necessary to mold you into who you were designed to be. After months of research, I found there were other parents seeking alternatives for their children as well. My sister reached out to one of her long-time friends who had also been diagnosed with sickle cell disease, and she helped us simply by being there, by telling us we were doing a great job. He was going to be okay, thriving was not only possible, it was all she knew.

Courtesy of Jessica Brown

In the middle of my fear, I drew courage from my support system and the complete trust and dependency Gabriel had in me. I looked at my 8-month-old and envisioned him as a toddler, then pre-teen. Eventually, we would be busting a move at his wedding, and I would be snuggling my own grandchild. As his mom, I could see a future for him, one outside of the projected hospital visits. When we took Gabriel from the doctor’s office that day, I knew we would never be back. It has been one year since then, and we have a new team of healthcare professionals who understand us, listen to us, and treat us fairly.

Before he turned one, I began putting my research into action, and with the help of a holistic doctor, we began adding natural vitamins and foods rich in key nutrients to his diet. While this is not a cure, it has been our path to managing the potential symptoms inherent to sickle cell anemia and beta-thalassemia. Since day one, Gabriel has been a chubby, happy, energetic, and quite a stylish child. I am thankful and grateful Gabriel is healthy, smart, funny, cheeky and a beautiful, with an entire tribe of prayer warriors, and never having suffered any symptoms of sickle cell or beta-thalassemia.

Courtesy of Jessica Brown

I know I couldn’t have made caring for Gabe look this easy without the support of my family. The medical bills, research, medication, tests, the endless jokes and hugs, everything that comes with caring for a little one was made easier. I know the holistic route is not the solution for everyone, but for Gabriel, our routine works, and for as long as it works I will continue. Through Gabriel I learned courage, I am a proud mom, and a fierce warrior who knows the meaning of gratitude.

Courtesy of Jessica Brown

My wish for Gabriel as he grows is for him to know with all certainty he is not wounded, he is a unique warrior. He has the blood of his ancestors flowing through him, and he is to live his life out loud, knowing he is the realization of his ancestors’ wildest dreams. Although our journey is just beginning, I realized early on in life most of the things God let us experience, if they’re truly great, don’t last forever. In fact, by the time we really begin to appreciate the experience, it is already over. I am savoring every moment of parenting, spoiling, raising, and playing with my boy.

Courtesy of Jessica Brown

In addition to being Gabe’s mom, I have now made it my mission to raise awareness for the genetic condition sickle cell anemia and all subsets of the disease. We use Gabe’s dapper style and fashion to raise awareness for others. Gabe’s birth gave me the opportunity to help others and provide resources I wish I’d had sooner. It is my mission to ensure the world sees the faces behind this condition, our families, and gives proper attention, research, access, lifelong care, and accommodations in the school system and workforce to ensure the funding to the sickle cell community of today.

Courtesy of Jessica Brown

In a time like this, where we all feel a more heightened sense of caution and a deeper sense of isolation, where there is such uncertainty, I want others to know they are not alone. We always have hope, and we are united when we share our stories and work together for change. We don’t have to suffer in silence. No one can do everything, but everyone can choose to do something. This is my something.”

Courtesy of Jessica Brown

This story was submitted toLove What Mattersby Jessica Brown from Florida. You can follow their journey on Instagram, here and here. Donate to their nonprofit and learn more about sickle cell disease on their website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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