‘It took him nearly an hour and a half to finish a bottle. Milk would come out from his nose, his ears. EVERYWHERE.’: Boy’s cleft lip and palate ‘gave him a chance to know why he’s special from an early age’

Unilateral Cleft Lip Discovery

“There are certain moments that divide our lives into before and after. Some are large-scale and universal — we all know life before and after 9/11. Some, though, are smaller, more personal. Some are beautiful. They are the best kind of moments: the first kiss with our last love, your wedding day, the birth of your child. But some are harder. Some are traumatic.

These traumatic memories are often shaky at best. What you think you’ll remember, what you should remember, is often fuzzy and gauzy, hard to recall. But the mundane, the small things surrounding the trauma, those are solidified, movie-reel quality, easy to recall, and in surprising clarity.

Life is funny like that, I guess.

The day we found out about Connor’s cleft and the majority of our hard, heartbreaking journey through his first year are just like that: contrasting and incongruent. Things that should be emblazoned in our memories… well, they aren’t. They’re fuzzy and soft. But the little things, tiny snapshots of tinier moments are rock solid. They’re permanently tattooed on our brains.

They discovered Connor’s cleft at our 20-week ultrasound. You know the one, where you think it’s mostly about finding out the sex of the baby? Yeah, it’s not. It’s so they can scan every square inch of that baby’s body to check for defects. In ours, they found one.

I was alone when they told me, well, alone except for Dillon, my squirmy one-year-old sitting next to me in the stroller. I was innocent enough to believe the post-ultrasound meeting the doctor requested was a mere formality, so I sent Jeff back to work. I didn’t realize what was to come.

I sat there, in her brightly lit office (see, the things we remember are weird) and listened as the doctor explained what they saw on the ultrasound, how they suspected he has a cleft lip and most likely, palate. She told me we would need more testing to determine the severity and if anything else was affected, as clefts are often part of much larger and more complex syndromes and disorders. She told me that she was sure it was okay.

Definitely, maybe, probably okay.

The things I should remember about this moment are blurry and vague. Was the doctor kind and caring when she delivered the news? Or cold and medicinal, without compassion? The ultrasound tech, did she give any tells? Did she stop once she got to his face and run the wand back and forth, back and forth, trying to be certain what she was seeing was real? That it was, in fact, a cleft? I don’t remember these things at all.

But I do remember sitting in that office, absorbing this news in waves as the doctor talked, not saying a word, probably open-mouthed in shock. All the while, I was clenching tightly to an old bag of dry Cheerios, handing them over to Dillon individually, one by one, in a strange repetitive motion, unconsciously, as if the steadiness of my movements could soften the blow of her words, cushion my fall. It did not.

It’s not a short ride, the trip from her office to our old house, yet I don’t remember any of it. I don’t remember if I cried. I don’t remember if I called Jeff (surely, I did) or what I said. I don’t remember calling my mom or my mother in law. But I know now I did.

I do remember carrying my still squirming baby boy up the stairs to his room and collapsing on the ground next to his dresser, unable to move, unable to even cry. I remember Jeff finding me there, picking me up, holding me. Our collective shock and grief were too big for words, just touch. I remember these things.

There was so much to decide and quickly. We had a million pamphlets to read and absorb, pictures of children with clefts. I found it excruciating to look at them. My instinct was to turn away, but I forced myself. This would be my child. This would be his face. We had to decide on testing. Our window was closing fast. We had to decide if we wanted to know — is it worse? Is there more wrong? And what then?

We didn’t. We opted out of testing. This was already our child. He was already Dillon’s baby brother. Testing would tell us nothing. We loved him already. We decided to wait.

The next 5 months of my pregnancy were filled with uncertainty and worry. What should have been a time of nesting and joy was rife with waves of panic and despair. What would he look like? ‘What if I can’t accept his face? What will people think? What if there is something else wrong? What if he doesn’t make it.’ These were my thoughts.

A strange thing happened during this time. I grew up. I got tough. I began to fight for my son. Even through all of the emotion and fear, I knew I was NOT ashamed of him. My biggest act of defiance would be to tell the world about him, to stare down pity and disgust and fight, always fight, for him so he knew we loved him and we were NOT ASHAMED of how he looked.

Memory, once again, plays tricks on me here. I remember being bold, almost abrasive during this time. I’m pretty sure I made it awkward, and at times, I was a total Debbie Downer. I told everyone about his cleft, even strangers who asked if it was a boy or a girl. I made it weird. They were just being nice; they didn’t necessarily need a run-down of my unborn child’s expected medical conditions. But they got one anyway. I was not ashamed.

And then he was born. After months of waiting, our beautiful boy was born. There were hundreds of people in the room (see? fuzzy memories are susceptible to exaggeration). They didn’t know what to expect with his condition, so all hands were on deck. He was beautiful, with a large (very large) gap in his smile and a matching one in his palate. But he was beautiful.

Cleft Lip Struggles

I don’t remember much of his birth. I don’t remember if it was long or hard or eventful. I don’t remember holding him right away (I don’t think I did, I think the doctors took over). I don’t remember feeling shock or fear or sadness. I don’t remember feeling much.

But I do remember Jeff turning to me, once the room had cleared and we were alone, saying ‘It’s bad, isn’t it?’ Because it was visually jarring. As clefts go, it was large, a Unilateral Complete Cleft Lip and Palate. Unilateral meaning on just one side, complete meaning it was a full cleft, involving his entire lip and nose. It was jarring.

But he was still our baby and to us, he was the most beautiful of beautiful gifts from God.

There were struggles in those early days. I could not nurse. It’s not possible with a cleft. I chose not to pump, knowing every time I did, I would feel a little jolt of sadness for yet another loss. I couldn’t bear it. So I chose formula. I still feel grateful for the nurses who held the La Leche League ladies at bay, telling them I was off-limits. A lecture about the benefits of nursing and pumping was not going to be helpful. It would heap more guilt on my already sagging shoulders. Those nurses knew this. They were angels.

Still, it took him forever to eat. I mean forever. Typically, a newborn eats every three hours. It took him nearly an hour and a half to finish a bottle. Milk would come out everywhere, from his nose, his ears. EVERYWHERE. He would gulp for air, swallowing so much because of the giant hole in his mouth and his inability to properly form suction or suck, nearly suffocating. It was terrifying at times.

Yet this child, this beautiful baby boy, kept working. He never cried. He just worked and worked. If it’s possible for a baby to be earnest in his endeavor, he was. His indomitable spirit showed through even then.

Going out in public was interesting, at best. There is this deeply imbedded human instinct that creates an almost visible gravitational pull towards babies. It’s a need, an almost unconscious pull to want to cuddle, hold, tickle, coo, and congratulate parents on the perfection of their offspring. It’s natural and you can see it as someone approaches you. Except when your baby isn’t perfect, it gets extremely awkward. It’s heartbreaking when you’re that parent, standing there with a baby you love more than life, who is beautiful in your eyes. It’s heartbreaking as you watch someone approach with this hunger in their eyes, only when they get close, they can’t quite make sense of what they’re seeing. They don’t know what to do or say. They go silent. It’s easier to pretend you and your baby do not exist than walk through the awkward and complicated social maneuvering required to acknowledge the baby and politely ask what is wrong. Most people move on. You are invisible.

It’s an act of mercy to let them go, to watch their face register first confusion and then embarrassment. What do they say? How do they get out of this one? So you let them off the hook, assume invisibility. But it’s an act of mercy that breaks you, every single time.

I remember being on a flight with Connor, getting settled in, when a flight attendant approached us, walking steadily down the aisle, intent on seeing the baby. When she saw his face, she couldn’t quite bring herself to stop. It was easier to move past our row, eyes averted, and pretend we were invisible. There was a baby a few rows behind us, a ‘perfect baby’ with a perfect face. I sat in tatters as she held that baby and made a huge fuss over her for most of the flight.

I wanted to die inside.

As we exited the plane an older man said to me, with the kindest eyes, ‘How is he doing? He’s beautiful.’

I don’t know how he knew what I needed to hear or how much just that simple acknowledgment would matter to me, but he did. It reminded me we existed. We mattered. And my mom heart opened just a bit. He was beautiful. He was ours.

As Connor grew, he surpassed everyone’s expectations. He learned to take a bottle. He went through all of the important milestones. He was, for all intents and purposes, completely ‘normal’ except for the cleft. And, man, did we love that wide smile. To the rest of the world, it was a defect, one we felt pressure to ‘hurry up and fix,’ but to us, it was precious. It was his. He had huge blue eyes, he still does in fact, and he was always alert, always observing. He was a wonderful baby. He rarely cried, despite suffering from terrible reflux (because he took so much air in at each feed) and struggling with ear infection after ear infection, leading to unsuccessful surgery after unsuccessful surgery.

And then…the big one came. It was time to say goodbye to his wide smile, forever.

Cleft Surgery

It seems odd we would have to fight with our insurance company to get coverage for his cleft repair. It seems weird, but it’s true. The surgeons who repair clefts are plastic surgeons. Because our collective wallets and premiums have to be protected from people trying to get tummy tucks and boob jobs on our dimes, the mere fact it was labeled ‘plastic’ categorized it as ‘elective.’

Despite how ridiculous the thought was, that anyone would ever choose to get some plastic surgery for an infant, that is what we were fighting. His surgery was delayed for months because of this. We got decline after decline after decline. It was one of the darkest times of my life.

Memory is weird, yet again, as I don’t remember what eventually broke the stalemate. In my mind, Jeff marched down to his HR and staged a sit-in, complete with peace pipes and protest songs, until they intervened. I’m not sure it was that dramatic (especially if you know Jeff). Nevertheless, we were cleared and surgery was scheduled.

Sending any child into surgery is terrifying, whether it’s a simple tonsillectomy or a complicated heart procedure. The same feeling stands. You feel helpless. You feel like you’re operating outside of your body. You’re sending your baby, the child born from your flesh and blood, into an operating room so people can put him to sleep and cut him open. You want to trade places. You want the pain, not him. But you can’t. You can’t trade and you can’t be there. It’s your child’s journey. Not your own.

It’s a wonder there aren’t more mental health interventions within the walls.

Cleft surgery is weird. Your child comes out looking completely different. The lips you kiss goodbye before surgery, you will never see the same again. You think you’d be excited to see this repair happen, to hopefully put a halt to the stares and the invisibility. But you’re not. You will miss that wide smile. You want to scream ‘STOP.’ But the baby that comes out, it’s like a whole new one. His face is whole. He’s stitched up.

Life After Surgery

Life after the repair was easier. He looked more ‘normal.’ In Connor’s case, you could barely tell. Shortly thereafter, we did it all again, this time for the palate. Jeff had to give blood because the chance for a bleed out is high. We did it again. Dor Connor, there has been more. He’s had three more major and multiple minor surgeries since then. He will have more. He had speech therapy for years. He had to learn how to drink from a straw and eat again. He wore arm restraints after each surgery so crawling and walking were delayed. Everything was harder.

Connor’s cleft made him stronger. It gave him insight into pain and struggle and a heart full of empathy, one I even struggle to understand as an adult. He’s smart, wicked smart, and his questioning and contemplative nature give him the air of someone more mature than his ten years on this planet. He’s gorgeous, cleft scar or not. He’s an all-around good kid. He helps others and is kind. He is a loving son and a good (albeit, not great because siblings are annoying) brother. What I thought would define him instead strengthened him, made him better.

We do not understand how God found us worthy of being his parents. We did not understand then, nor do we now, how we managed to make this child so imperfectly perfect. We do not understand but we’re grateful every day.

And now Connor is a healthy, happy 11-year-old boy. We were talking the other day about his cleft and I asked him what he thought about it and if he’s sad he had one. The answer might surprise you. He’s not sad at all. We have this saying in our family, ‘what makes you different, makes you special.’ He feels as if his cleft gave him a chance to know why he’s special from an early age. His heart is so big. He is so strong and he knows why.

Most of all, he wants to share his story. Writing this was not my idea. He is open and honest about his struggles and he wants others to know it’s okay. He’s okay. You can ask questions. It’s better than being invisible. People who look different or have scars, they’re just like you and me. They need love and acknowledgment. They need to be visible too.”

This story was submitted to Love What Matters by Meaghan Dawson. Be sure to subscribe to our free email newsletter for our best stories.