Updated: Jan. 17, 2015
Originally Published: Oct. 10, 2013
Before I became a mom, I was already a professional worrier. Fast forward to now, and with two little ones in tow, I’ve turned worry into an Olympic sport. But nothing could prepare me for the journey that awaited me.
It was a balmy August day in 2011 when I hit the halfway mark of my first pregnancy. To get to this point, I had tried everything from fertility teas (that were basically confetti) to acupuncture, some rather dubious Chinese herbs, and even chakra balancing. We also relied on ovulation kits and Intrauterine Insemination, all in the hopes of welcoming a little one into our lives.
As I approached the pivotal 20-week ultrasound, I was a bundle of nerves. I worried about whether I’d relate to a boy or if I’d disappoint my husband with a girl. Little did I know, my worries were about to escalate.
During the ultrasound, my husband and I engaged in light banter with the technician, discussing the merits of each gender. Everything seemed fine at first, but our baby was shy, hiding her face. Eventually, the technician confirmed we were having a girl, and we experienced a brief moment of joy before our world turned upside down.
My doctor entered the room with a grave expression and informed us that our little one had a bilateral cleft lip and a possible cleft palate. She assured us it was a minor issue, just a little surgery and a scar to fix. However, that was just the beginning of a whirlwind of appointments where we discovered our baby indeed had a bilateral cleft lip and a cleft palate. The severity of the palate would remain uncertain until her birth, and we learned she would need surgeries within her first year.
We met an entire team of specialists: orthodontists, dentists, speech therapists, nurses, ENT doctors, and plastic surgeons. All for what was supposed to be a simple anomaly! Thankfully, our cleft team generously shared their contact information, and I quickly turned into a question machine, bombarding them with inquiries about everything from birth to her teenage years. I was that mom who wanted to know about braces and speech patterns before my baby even arrived.
People often didn’t know how to approach me. My social worker mom was full of reassurance, while my writer brother did his best to research things that were out of bounds for me. My sister, an ER doctor, tried to answer my questions, but I found myself learning faster than she could keep up with. My father, a Rabbi, reassured me that God had a plan, but I was skeptical and frankly unimpressed. Meanwhile, my mother-in-law was distraught, questioning how this could have happened.
Despite my frustrations with the universe, I still prayed nightly, wrapping my growing belly in a pink blanket and hoping for the best for my little girl. I ran through lists of potential realities and possibilities, praying we could handle the former while avoiding the latter.
Madeline, my beautiful baby girl with hazel eyes and auburn hair, arrived a month early, likely tired of my endless worrying. Born slightly early and facing her challenges, she was a NICU star, winning hearts with her big almond-shaped eyes and fiery spirit.
Once we transitioned from the NICU to home care, each visit with the cleft team brought new challenges. The professionals spoke calmly, yet their instructions often felt overwhelming. Appointments felt like episodes of a reality show where we’d receive our next trial. They always ended with, “But the babies don’t mind,” which made me wonder if they ever received feedback from the little ones.
Feeding her was an adventure—using a special bottle where we squeezed milk into her mouth—and we played games to see how long she could keep her retainer in place. The process was a juggling act of taping her lip, keeping her fingers away post-surgery, and massaging her operated lip.
Since those early days, Madeline has undergone multiple surgeries, including lip and nose revisions, and she’ll need more as she grows. Yet, she is so much more than her clefts. She’s a vivacious little girl with a dazzling smile, auburn curls, and a personality that shines. She loves to sing and dance, and her delightfully clever mind remembers entire children’s books by heart.
Still, I can’t help but worry. I think about bullying, how she’ll feel about her cleft as she gets older, and the bond she’ll share with her baby sister. I fret over her upcoming surgeries, her speech, and whether she might ever blame me for any of it. The weight of these concerns can feel heavy, but I remind myself that Madeline is an incredible fighter, and I just need to work on easing my own worries.
For those navigating similar paths, check out this post about home insemination and consider resources like Make a Mom for guidance. Another great resource is UCSF’s fertility insurance FAQ for any pregnancy-related inquiries.
In summary, being a cleft mom is a unique journey filled with challenges, but it’s also one of love, resilience, and unwavering hope. Madeline may have her obstacles, but she’s destined for greatness, and so is her worrywart mom!