Parenting
What It’s Like Being a Cleft Mom
Even before I embraced motherhood, I was a natural worrier—now, with two little ones, I’ve truly mastered the art. I can spin “what-if” scenarios like a pro. But nothing prepared me for the news that would change my life forever.
On August 16, 2011, I was halfway through my pregnancy with my first child. The journey to get there was filled with various attempts—ranging from online fertility teas sprinkled with “baby dust” (confetti, really) to acupuncture, some rather intimidating Chinese herbal remedies, and chakra balancing. Alongside ovulation kits, we also tried Intrauterine Insemination.
As I approached the 20-week ultrasound, I was anxious about the scan, worrying whether I’d relate to a boy or if I’d disappoint my husband with a girl. Little did I know this ultrasound held more significance than I could fathom.
As the technician began the scan, we engaged in light conversation, discussing the merits of each gender. Everything appeared fine, but our little one was quite shy and kept hiding her face. We joked about her being coy, and then the technician announced we were having a girl. We rejoiced for a brief moment, eagerly sharing the news with our families, blissfully ignorant of the storm that lay ahead.
My obstetrician entered the room and delivered the life-altering news: our baby had a bilateral cleft lip and a potential cleft palate. We were given a list of next steps and a contact number for the cleft team at the children’s hospital. The way she presented it made it seem straightforward—a minor surgery for a small anomaly followed by a scar.
However, the reality was far more complex. We soon learned that our daughter not only had a bilateral cleft lip but also a cleft palate. The extent of her condition was uncertain until we met her. She would require surgery for her lip within the first three months and another for her palate within nine months. We were introduced to a wide array of specialists—orthodontists, dentists, speech therapists, nurses, ENT surgeons, and plastic surgeons—each appointment revealing more challenges ahead.
Fortunately, the professionals on our team provided their contact information, and I found myself inundating them with questions about everything from infancy to her teenage years. While every parent experiences worry, I had the unique burden of anticipating every possible scenario before she even arrived. My inquiries became quite notorious within the hospital’s circles, as I was the mom who was already pondering her daughter’s braces and speech patterns while she was still in utero.
Navigating conversations with family and friends was tricky. My mother, a social worker, insisted everything would turn out fine, but I struggled to find comfort in her words. My brother, a writer, dove into research that was, unfortunately, off-limits according to the cleft team. My sister, an ER doctor, tried her best to answer my questions, but I quickly realized I was often more informed than she was. My father, a rabbi, reassured me that there was a divine plan, but I was unconvinced and frankly unimpressed. My mother-in-law would call in tears, grappling with how this could happen “to her.” Friends in similar life stages would note that younger parents often face these issues, as if that somehow made it any better.
I battled feelings of anger toward God but still found myself praying every night. I enveloped my growing belly in a soft pink receiving blanket, offering prayers for my daughter. I contemplated the realities we might face while hoping for more favorable possibilities.
Our beautiful little Emma made her entrance a month early, likely exhausted from hearing my constant worries throughout my pregnancy. While medical professionals attributed her early arrival to pre-eclampsia, I had my suspicions—it was probably a case of “Enough already, Mom!” As expected, Emma was born with a bilateral cleft lip and, as feared, a complete cleft palate. This meant the majority of her mouth’s roof was absent, along with a gap where her lips and nose should meet. Yet, despite these challenges, we knew she was simply adorable.
Emma spent time in the NICU, learning to feed with a special bottle designed for her needs. We took on the task of caring for her post-NICU, which involved navigating a slew of new challenges. Every appointment with the cleft team brought exciting yet daunting tasks. I often felt like I was on an episode of “Survivor,” waiting for the next challenge to be revealed, while the professionals reassured us that “the babies don’t mind.” I often wished to ask if the babies ever provided feedback on their experiences!
Some of the more thrilling challenges included using a special bottle to feed her by gently squeezing the milk into her mouth. We experimented with a retainer held together by nose clamps and denture cream, playing the game of “how long until Emma pulls it out.” At one point, we had to tape her lip and thread it through the clamps until we learned this was simply a decision made for aesthetic reasons by her surgeon. After her surgeries, we fed Emma with syringes, carefully keeping her hands away from her mouth during recovery. We even had to massage her lip post-surgery, applying pressure to the area for 30 minutes every day.
Since those initial surgeries, Emma has undergone various procedures, including a lip and nose revision and an ear tube insertion. She has received a bridge to replace teeth affected by the cleft and will eventually need a bone graft, a rhinoplasty, and possibly jaw surgery. Despite all of this, she is heartbreakingly beautiful, with a radiant smile that lights up her face. Emma has auburn curls, is brimming with energy, and has a knack for reciting children’s books from memory. She’s featured in a promotional video at the children’s hospital, showcasing not only their amazing work but also her own fabulousness. Emma is so much more than her clefts.
Yet, my worries persist. I worry about potential bullying, her emotional journey as she learns about her cleft, and her relationship with her younger sister as they grow. I think about her future surgeries and the possibility of needing more than anticipated. I fret over her lip, teeth, speech, and nose, and I fear that she might hold me responsible. While I share the typical concerns every parent has about their child’s future, being a cleft mom amplifies those feelings.
What I know for sure is that Emma is an incredible little warrior, the strongest person I know. I must work on being a less anxious mom while she continues to shine.
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Summary
The experience of being a cleft mom is filled with a blend of joy, worry, and triumph. From the initial shock of diagnosis to the ongoing journey of surgeries and care, every step is a testament to resilience—the resilience of both the child and the parents. Emma, the author’s daughter, embodies strength and beauty, proving that she is so much more than her clefts.