Parenting
Long before I embraced motherhood, I was already an expert at worrying. Now, with two little ones to care for, I’ve elevated my anxiety to a whole new level. My journey into parenthood took an unexpected turn on August 16, 2011, when I was 20 weeks pregnant with my first child. This pregnancy was the result of countless efforts, from fertility teas sprinkled with “baby dust” (a.k.a. confetti) to acupuncture, bizarre Chinese herbs, and even chakra balancing. We also relied on ovulation kits and intrauterine insemination.
As the ultrasound approached, I couldn’t shake my worries. I was anxious about whether I would connect with a boy or feel disappointment if we had a girl. Little did I know that this scan would reveal far more than I anticipated.
In the dimly lit room, my husband and I engaged in small talk with the technician, discussing the pros and cons of each gender. As the scan progressed, everything seemed fine, yet our baby kept hiding its face. We joked about our little one being shy. Then, the technician informed us that we were having a girl, and joy filled the room as we called our families to share the news. But that happiness was short-lived.
My obstetrician entered with a somber expression, abruptly telling us that our daughter had a bilateral cleft lip and a possible cleft palate. We were handed a list of next steps and a contact number for the cleft team at the children’s hospital. The doctor’s matter-of-fact tone made it sound manageable—a simple surgery for a minor issue, followed by a scar.
What followed was a whirlwind of appointments that confirmed our baby indeed had a bilateral cleft lip and cleft palate. We were advised that she would require surgery within her first three months to repair her lip and again within nine months for the palate. We met an entire team of specialists, including orthodontists, dentists, speech therapists, nurses, ENT surgeons, and plastic surgeons. All this for what was described as a minor anomaly!
To my surprise, the professionals on our team were generous with their contact information. I inundated them with countless questions about every stage of my daughter’s life, from birth to her teenage years. I worried about everything—my emails became famously detailed among the staff at the hospital. I was the mom who was asking about braces, speech, and her nose before she was even born.
People around me struggled to find the right words. My mother, a social worker, insisted everything would be okay, but I was not convinced. My brother, a writer, conducted research that the cleft team had deemed off-limits. My sister, an ER doctor, tried to reassure me but quickly realized I was more informed than she was. My father, a rabbi, spoke of a divine plan, but I was not buying it. My mother-in-law frequently called to express her disbelief, while friends told me that younger mothers faced similar challenges, assuring me that age wouldn’t matter for our unborn child.
Angry at God yet still praying nightly, I wrapped my growing belly in a pink blanket, asking for strength for my baby girl. I listed the realities I feared and the possibilities I hoped would never come to pass.
A month early, my hazel-eyed, auburn-haired daughter, Lila, made her entrance into the world. Perhaps she was as tired of my worrying as I was of myself. The medical reason for her early arrival was pre-eclampsia, but I knew better; she was probably exhausted from my anxieties. True to our fears, Lila was born with a bilateral cleft lip and a complete cleft palate, meaning the majority of her mouth’s roof was missing, along with the split where her nose and lips should have fused. Despite everything, we found her utterly adorable.
Lila spent some time in the NICU, as she was born slightly premature and needed to learn how to feed using a special bottle. We quickly discovered that she was a NICU standout at 6 pounds and 9 ounces, charming everyone with her big almond-shaped eyes and spirited personality.
Once Lila was home, we began navigating her care and feeding. Each visit with the cleft team revealed new challenges. While the professionals were calm and collected, their instructions often felt overwhelming. I dreaded these appointments, half-expecting them to propose absurd solutions like dangling Lila from the ceiling to increase blood flow to her mouth. Each visit felt like an episode of “Survivor,” where we were handed our next challenge. They would always reassure us, “But the babies don’t mind.” I often wanted to ask if those babies ever provided feedback.
Feeding Lila was an adventure. We used a special bottle, squeezing milk into her mouth, and we played games to see how long it would take her to remove her retainer held in place by nose clamps and denture cream. After her surgeries, we had to feed her with syringes and prevent her from touching her mouth while she was teething. Daily massages of her lip post-surgery became part of our routine.
Since then, Lila has undergone a lip and nose revision, had ear tubes inserted, and received a dental bridge for teeth that fell out near the cleft area. Future surgeries loom, including a bone graft, rhinoplasty, and possible jaw surgery. Despite it all, she is breathtakingly beautiful, with an infectious smile, auburn curls, and a petite frame. Lila is smart, sassy, and has an incredible talent for reciting children’s books by heart. She has even been featured in a video at the children’s hospital to showcase their work and her charm. She is so much more than her clefts.
Yet, I continue to worry. I fret about bullying, her feelings as she learns about her cleft, and her relationship with her sister as they grow older. I am concerned about her upcoming surgeries and what they might entail. As any parent would, I ponder what life holds for her and her sister, but being a cleft mom adds layers of anxiety to the typical worries.
What I am certain of is that Lila is an incredible little fighter and the strongest person I know. I just need to learn how to manage my own worries.
For those exploring the journey of parenthood, you can find valuable insights and support through resources like this fertility insurance FAQ and information on exciting developments in assisted reproductive technology. Also, if you’re considering home insemination, check out Make A Mom’s Insemination Kit for guidance.
Summary:
Navigating the challenges of being a cleft parent involves a whirlwind of emotions, from initial joy to overwhelming worry. The journey is filled with medical appointments, feeding challenges, and the constant battle against anxiety. Yet, through it all, the love for the child shines through, reminding parents that while the journey may be complicated, their child is more than their condition.