My daughter’s large, caramel-brown eyes are the most striking features on her face. They are so large, in fact, that we could see them on the ultrasound I had when I was twenty weeks pregnant with her. The ultrasound also revealed another distinctive feature about E’s face — her cleft lip.
Back in 2003, I didn’t know much about cleft lips. The term conjured up images from Smile Train brochures of school-aged children who had never had their clefts repaired. The memories of these images terrified me. I recalled children with open lips, their gums twisted and protruding from beneath flattened noses, their teeth clearly visible even though they weren’t smiling.
I did what any new mother confronted with a frightening diagnosis for their unborn baby would do — I learned everything I could about cleft lip and palate.
In the U.S., most babies have their lips repaired within three weeks to two months. At least, that was the case sixteen years ago, but some repairs (including the one we chose for E) can take longer.
I was scared for E, but determined to get her the best care. We were lucky to be located just two hours north of Manhattan where a world-renowned cleft team folded E into their care even before she was born. The treatment she got was groundbreaking. It’s called nasoalveolar molding (NAM), a process that required we tape a plate into her mouth for six months prior to surgery.
The plate was similar to the retainer that you get after your braces come off, except it covers the baby’s entire palate. Each week, I took E to her team in New York to get “molded.”
An orthodontist, trained in the procedure, adjusted the molding plate so that it gradually moved E’s gums into alignment to prepare them for surgery. The plate also stretched her columella (the piece of skin that covers the cartilage separating the nostrils). This gave the surgeon more skin to work with when repairing her nose.
I blogged about E’s treatment for years and I truly don’t mean to revisit all those anxiety-riddled, pre-surgical posts now, but I do want to acknowledge how important it was for me, as a new mother, to be surrounded by people who knew exactly what to do for my baby.
They helped normalize her cleft. They provided support to our family throughout E’s treatment and involved us in her care. They taught me how to be an advocate for my child, a skill that served me well a few years down the road when my older daughter was diagnosed with cancer.
E was born with one of the most severe types of clefts — a bilateral cleft lip and palate. Her lip was open on both sides of her nose, the defect extending to her nostrils, gums, and into her soft and hard palates. In fact, she had no palate tissue at all. Before her palate repair at age one, I could see her straight up into her nasal passages when she opened her mouth.
Her lip, nose, and gums were repaired at six months old, right on schedule. Her palate was repaired six months after that and, at age 7, she had a bone graft to fill the gaps in her alveolar ridge (the jawline just behind where your upper teeth come in).
E would not need surgery again for nine years, but she would begin what amounted to 8 solid years of orthodontia to move, align, and remove various teeth (kids with cleft palates tend to have teeth abnormalities).
In spite of her medical issues, or perhaps because of them, E was a happy, well-adjusted child who has grown into a thoughtful, empathic, and compassionate teenager. At sixteen, she has experienced an incredible amount of pain, including the loss of her older sister three years ago.
E’s medical issues took a backseat to her sister’s for years, as did the self-esteem issues that accompany kids with craniofacial differences.
But I knew she was unhappy with her face. That’s why I pushed to get her final and most anticipated surgery done last month — a lip/nose revision that would add symmetry to and reduce the size of her nose and create more volume around her top lip.
Again, we’re lucky to be in New York. The pandemic is currently under control here, with hospital cases at an all-time low and most of us wearing masks, avoiding large gatherings, and continuing to isolate or remain socially distant. The surgery went well and E is beginning to adjust to the changes in her face which, for the most part, she’s happy with.
But even before this final step in a lifelong process of transformation, I loved E’s face. I’ve been telling her that for years.
“E, yours is my favorite face.” There is another favorite face of mine, of course, but I’ll never see that one again, at least not in this lifetime.
To mothers who have just begun the long journey of surgery, orthodontia, and treatment that comes with having a child with a cleft lip and palate (or other craniofacial abnormality), I want to say that it’s okay to love your baby’s face, even though it’s not perfect.
Whose face is perfect, after all?
I loved E’s face even before the lip repair. A few days before her first surgery, I confessed to my husband that I would miss her wide smile and that I hated to change it even though that made no sense at all.
“She can’t live like this,” my husband had said. Of course he was right, but it didn’t change my love for my baby.
I’ve loved E’s face at every stage of her transformation — with and without braces, with and without the bright red scars that faded to nothing (or almost nothing). Even as she’s hidden her smile and lamented how her nose changed as her face grew, I’ve loved every contour, every curve and dimple, and the beauty that shines from her wide, expressive brown eyes.
And yet, I cannot understand what she’s been through because her cleft is not my misfortune — it is her cross to bear. I would remind new parents of this too. Even though you love your baby’s face, the child your baby grows into will have to overcome obstacles you may not understand. Your child may hate their face, at least for a while.
I’ve never liked my nose. I’ve always hated my chin (especially now, as I get older and my chin becomes ever-more acquainted with my neck). But when I say this to E, she shakes her head and replies, “At least your face is normal.”
The final thing I would say to new parents is this: it will be okay.
Kids with craniofacial differences are on a different journey than the rest of us. They have bigger mountains to climb when it comes to self-acceptance and learning to love their faces. E is working on this now. I can see her, at last, learning to like her face.
My hope for her is that someday she will come to love her face as much as I do, and that self love will inspire others to love themselves too. Until then, I’ll hold enough love for the two of us because, after all, hers is my very favorite face.