Before I embraced motherhood, I was already a natural worrier. Now that I have two children, I have elevated my anxiety to an art form. I can ponder “what-ifs” with the best of them. Yet, I never expected this particular journey to unfold…
On August 16, 2011, at 20 weeks into my first pregnancy, I was filled with anticipation. After trying various methods to conceive—like online fertility teas sprinkled with “baby dust” (which was essentially confetti), acupuncture, and even some daunting Chinese herbs—I was finally expecting. We also utilized ovulation kits and intrauterine insemination.
As the 20-week ultrasound approached, my mind raced with concerns about whether I would connect with a son or disappoint my husband if we had a daughter. I was blissfully unaware that this scan would reveal much more than just the baby’s gender.
During the ultrasound, my husband and I engaged in light conversation with the technician about the pros and cons of each gender. While everything appeared normal, our baby kept covering her face, leading us to joke about her being shy. Eventually, we discovered we were having a girl, and we quickly shared the news with our families. For a brief time, we basked in joy—until everything changed.
My obstetrician entered the room with a serious demeanor, delivering the life-altering news that our daughter had a bilateral cleft lip and a possible cleft palate. We were handed a list of instructions and a phone number for the children’s hospital to set up an appointment with the cleft team. The doctor made it sound straightforward—just a minor surgery to fix an anomaly and then a scar.
However, what followed was an avalanche of appointments confirming that our daughter did indeed have a bilateral cleft lip and a cleft palate. The severity of the palate issue would remain unknown until we met her. She would require surgery to repair her lip within her first three months and another operation for her palate within her first nine months.
We met with various specialists: her orthodontist, dentist, speech therapist, ENT, and plastic surgeon. All for a simple anomaly and a scar! Fortunately for me, the professionals on our team provided their contact information, and I inundated them with questions about my little girl. I envisioned every potential outcome from birth to age 16, a unique privilege to worry about it all before she even arrived. My inquiries became legendary within certain circles at the children’s hospital.
Friends and family struggled to find the right words. My mother, a social worker, reassured me that everything would be okay, but it didn’t feel that way. My brother, a writer, researched everything I was forbidden to know, and my sister, an ER doctor, did her best to answer my questions—but I quickly outpaced her knowledge. My father, a rabbi, suggested that God had a plan, but I was skeptical. My mother-in-law often called to express her distress over how this could happen “to her.” Some friends mentioned that younger people might face similar challenges, attributing it to our age.
I felt anger towards God, yet I prayed every night, wrapping my growing belly in a soft pink blanket. I went through a list of realities and possibilities, hoping that the former would be manageable and the latter would not come to pass.
My beautiful daughter, Lily, arrived a month early. While medical reasons indicated pre-eclampsia, I believed she was simply tired of my worries. As expected, Lily was born with a bilateral cleft lip and, as I feared, a complete cleft palate, meaning much of the roof of her mouth was absent, along with a split where her nose and lips should meet. Despite the uncertainty, we knew she was adorable. Due to her early birth, she spent time in the NICU, learning to feed from a special bottle.
At 6 pounds and 9 ounces, Lily was considered a giant in the NICU, capturing the hearts of the staff with her striking almond-shaped eyes and vibrant hair.
After leaving the NICU, we assumed the role of her primary caregivers. Each visit with the cleft team brought new challenges, and while the professionals spoke reasonably, their instructions often felt overwhelming. I dreaded these appointments, fearing they would suggest something absurd, like hanging Lily upside down to increase blood flow to her mouth. Each visit felt like a new episode of “Survivor,” where we faced our next challenge. They always reassured us that “the babies don’t mind,” which made me wonder if they had ever received feedback from the little ones.
Feeding Lily involved using a specialized bottle that required us to squeeze milk into her mouth. We had to use a retainer secured by nose clamps and play a game of how long it would take Lily to pull it out. We also had to tape her lip and thread it through the nose clamps until we learned this was merely an aesthetic preference of her surgeon. After the surgeries, we transitioned to feeding her with syringes while ensuring she kept her fingers away from her mouth during teething. We also had to massage her recently operated lip for 30 minutes daily. These were just a few of the tasks we managed before she turned one.
Since then, Lily has undergone a lip and nose revision, had ear tubes inserted, and received a bridge for teeth lost around the cleft area. Future surgeries will include a bone graft on her upper jaw, a rhinoplasty, and possibly jaw surgery. Despite it all, she is heartbreakingly beautiful, with an infectious smile that lights up her hazel eyes. She is full of life—smart, sassy, loves to sing and dance, and can recite children’s books from memory. Lily is even featured in a video at the children’s hospital, showcasing their work and her remarkable spirit. She is so much more than her clefts.
Still, I find myself worrying. I fear bullying, her feelings as she learns about her cleft, and how she and her baby sister will relate as they grow. I worry about upcoming surgeries and the possibility of needing more than anticipated. I often find myself wondering if she will blame me for this journey. While I share the typical parental concerns for both my daughters, being a cleft mom adds an extra layer of emotional complexity.
What I do know is that Lily is a remarkable fighter and the strongest person I know. My focus now needs to be on tempering my own anxious nature for her sake.
For those considering their own journeys into motherhood, resources such as Make A Mom and Fertility Booster for Men can provide valuable insights. For a deeper understanding of genetics and IVF, this Wikipedia entry is an excellent resource.
In summary, being a mom to a child with a cleft lip and palate is a journey filled with unique challenges. From navigating medical appointments to managing emotional complexities, it requires resilience and support. Ultimately, the focus remains on fostering a loving environment for our children to thrive, regardless of their circumstances.
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