The Best Thing About Our Baby Having a Cleft Lip and Palate

Our son was born with a birth defect called a cleft lip and palate.

This happens when the lip and roof of a baby’s mouth doesn’t fully close up in the womb creating a gap, thus the “cleft.”

During almost all of the pregnancy, we went about our lives completely unaware of it.

We were so excited to have another child, and with each passing day, the excitement grew. And around 36 weeks, we were ready to pop emotionally and physically. But something strange started to happen.

My wife experienced mild contractions, but not enough for labor. We were surprised but not scared, at first. Then the contractions went on for days.

Alarmed, our midwives thought it could be the placenta blocking the birth canal, which was scary. So they rushed to get us an appointment for a full anatomy scan of the baby to see if that was the case. It wasn’t.

But the doctor found something else.

In the tiny examining room (in New York City most rooms are tighter than you think they should be), my wife could sense that the doctor was uncomfortable. Eventually she found the words to say, “Your baby has a cleft lip and palate.”

I couldn’t be at the appointment but met my wife at the clinic so that we could walk home together. When I saw her there, she melted into tears. So I wrapped my arms around her and tried to provide some comfort.

Her reaction frightened me, and I asked her if the baby was ok. She said yes. But there was clearly more. Then she told me why she was so distraught.

And, after a moment, I said, “So, he’ll be like Joaquin Phoenix.”

She looked at me with a look that said: “What the #%*# are you talking about?” So to clarify, I said, “You know, the actor with the cleft lip; he’s famous,” and rattled off a couple of his better movies.

She ignored me. “I guess she wasn’t looking for clarity,” I thought.

Eventually, we walked out of the sterile clinic, hand in hand, bracing ourselves for the unknown as we plunged into the outer world.

Once we hit the streets, we prayed. It helped both of us.

Then we did the thing that she was dying to do—plan. Planning is my wife’s love language. So we talked through the scenarios and what we needed to do to find the best care we could and how we would go about it. I was already googling up physicians in NYC who specialized in this as we walked through Brooklyn on a chilly but sunny day. A course of action started or form as we made our way to the subway platform.

Everything started to feel ok again, when she said, “So. Joaquin Pheonix,” and smirked at me. “Yeah,” I said, as I googled him up and showed her a picture of him, “He’s a good looking dude, right?” She seemed to give an approving look. I said, “See. Our baby will be fine,” reassuring her.

A couple of days later, she went into labor. We weren’t sure if the baby was coming or not. But then something switched on, and it got real.

And all the while my wife was laboring, I held a hope that our baby didn’t have a cleft thinking there was a chance the doctor was wrong. But she wasn’t.

Twenty minutes later, our son was born, and it happened so fast that the midwives didn’t have time to arrive to make the birth. So my wife and I were alone (as we were for the first one).

He was healthy, but he had a full unilateral cleft lip and palate, which means his cleft was on one side and extended to the back of his mouth and up to his nostril.

I just wanted our son to be ok, healthy, “normal.” He was beautiful. But he was also different. He had a gap in his face.

Surgeries were also in his near future.

We had already researched all kinds of doctors, knowing who was the best and where they worked and reviewed their resumes and read all of the reviews and what so and so said about them in 2013. We talked to other parents of cleft babies and asked about their surgeons. We dug deep.

Then it was time to do interviews, which sounded like speed dating with surgeons. We set up meetings with our top three.

But after interviewing the first one, something clicked. He was confident, as all surgeons are. But more than that, he had a determination to provide the best outcome for his patients. And the postoperative pictures were amazing. Also, he specialized in cleft operations. It’s all he did. And somehow, there was even a twinge of humility in him. We liked him; and more importantly, we trusted him. So we canceled the other interviews because we didn’t need to look further. He was our guy.

The weeks that ensued were much harder than we thought they would be. It probably had to do with the fact that we were essentially shaping our baby’s face with a piece of acrylic, called a NAM.

Our baby basically needed a “retainer” for the gums, called a nasoalveolar molding (or NAM). It’s like that plastic contraption people wear on their teeth that an orthodontist will give them after they get out of braces. But our baby had that for his gums on his upper jaw (since newborns don’t have teeth).

He had to wear the NAM all day every day for the most part. And my wife and I (but mostly she) would fasten it to his face with surgical tape and rubber bands, the same ridiculously tiny ones used for braces. Every week my wife would go in to see the dentist so that he could adjust the NAM.

Our baby screamed a lot during that time because shaping a face with a big piece of acrylic in your mouth probably hurt him, or at least it was super annoying. So, like a banshee, he would rail at the top of his lungs. And for such a small human, he had a huge voice. And he would employ it for hours, sending us curling into a fetal position, feeling like we needed to vomit. It was hell.

There was also some screaming between my wife and me. I mean, having a newborn is hard enough with the lack of sleep and diapers and blowouts and making sure they’re gaining weight. Fights are bound to happen. But add the fact that your trying to pull one side of your son’s upper jaw to the other side to close a wide gap in his face is something else entirely. Babies cause stress. With the cleft, that was taken to another level. Sometimes we went nuclear.

But regardless of who was screaming and no matter how loud it was, we were grateful for the results. We knew that doing the NAM well would make a huge difference for the outcome of our child, so we wanted to overachieve here. And, Thank God, it worked.

After three months, the cleft shrank to a sliver.

But, nothing prepares you for letting your three month old baby go under the knife. The surgeries were planned. And the first one was scheduled. But we were terrified.

The lip and nose came first. Waiting for him to get out of the operation was terrible, but the transformation was astounding. After the swelling from the surgery went down and he started looking like our baby again instead of a boxer after fighting ten rounds, it almost looked like he never had a cleft. (These days, you can’t even see the scar.) It was amazing.

Then seven months later, right as the coronavirus started to ramp up in NYC, we had the palate surgery. To this day, I have no idea how the surgeon closed up the cleft on the roof of his mouth. One moment our baby had a gap on the top of his mouth. Then, later that same day, it was gone.

There was only one problem. It was agonizing for our baby. With stitching everywhere and raw flesh, it looked like the roof of his mouth was Frankenstein-ed together. It essentially was. And that meant pain. He was desperate for pain-killers, which we gave him. We agonized with him.

But all of that is past us now.

And these days, what happened almost feels like a dream, a distant memory of some event that probably occurred. It could have been someone else. And the truth is, it is.

There are thousands of other families who go through a similar experience, and many aren’t able to get the kind of care we received.

So, I’m grateful. It makes us—my family and me—more compassionate. We can empathize with and have compassion for those who also have difficulties or circumstances that are worse than ours. All of this has softened our hearts and made us more aware how hard parenting can really be. Having a baby is a dangerous business. It can crush your heart. But it’s worth the risk.

Best of all, we are grateful that God gave us this baby. He’s special. He’s undergone a lifetime of pain before he’s even tasted his first birthday cake. Some of the experiences were awful, but they gave us perspective. And we are richer because of him and all of the moments we’ve had, good—and bad.

Before the birth of our baby, if you had told me that a birth defect could be a gift, I would have thought the idea ridiculous. But now, I know it’s not.

We are blessed: We have a son who looks like Joaquin Phoenix. 😉

This is Cleft Awareness Week. And this is our story of having a cleft baby.

Love to you all.


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Get things done when working from home (even with kids)

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Working from home can sound fantastic, with all of that freedom and no commute, but it’s not always easy.  Sometimes it can feel impossible. But it’s not. 

Yes, you get to roll out of bed and be at your desk in a couple of steps without even needing to put a shred of clothing on to make a living, which is glorious, in theory. But getting out of bed to get to your desk across the room can be a challenge.

And there aren’t the usual social motivators and interactions that we get in an office, like other people looking busy in their cubicles, serendipitous meetings, or random water cooler conversations. Working from home can be lonely, especially if you live alone.

If you have kids, you may not have enough aloneness. No, you have constant distractions throughout the day. Not that you don’t love your children. You do. But they do have an amazing knack for yanking your attention away from your work when you’re all at home, say, during a pandemic. 

Even before the “shelter in place” order was given, I have been working from home for years and love it, even with our two lovely and very active boys. 

But I need little hacks and tricks to make it work well and help me be more productive.

Here they are. 

Abuse your calendar 

Schedule what you will be doing every day, all day. Seriously.

Use your calendar—hard. When will you be at your desk producing? For how long? When will you have that call with that client, your coworker? When will you eat lunch? Mark it all down. 

Doing this is the digital version of having social expectations except you’ve put it on your online calendar. Doing that gives you just a bit of accountability, at least to yourself. 

If you need that extra boost of fuel, share the calendar with others. It doesn’t need to be with your boss or coworkers. An outspoken friend will do. You know, the one who will call you out and FaceTime you just to make sure you’re at your desk when you said you would be. 

Set better goals 

We often set goals like “get work done,” but that’s not specific enough to be helpful, especially when you’re at home where it’s like the Wild West of working and anything goes because there’s no one watching. So setting the right kind of goals is critical to your success.  

First, you should note what task you want to accomplish or what project you want to start and how much of it, broken into smaller tasks, you want to complete during a block of time in the day. Doing that will revolutionize the way you think about how you spend your time. 

Second, don’t make big goals; make them small and bite-sized, something you can accomplish in an hour or two. Don’t make them aspirational so it’s a challenge to accomplish them. No.

Make them easily accomplishable. That way, you won’t get demoralized and you will feel and be productive.

You’ll be surprised by how much this will increase your productivity.  

Get the bed out of you

Some of us have a hard time getting out of bed. It just happens.

If that’s you, you don’t just need to get out of bed, but you need to get the bed out of you. You need create the social pressure that will break that habit and start a new one.  So do this.

Schedule early morning phone or video calls. 

If there’s a coworker or client or friend that you need to talk to, schedule a video call with them at the beginning of the day.

That will get you out of bed, because no one wants to look like a schlep buried under their duvet with bed head in a professional context. That will force you to at least look presentable from your waist up. 

Sometimes, there’s nothing like embarrassment to get our bodies out of bed. 

For a less shame-driven method, ask your partner or that outspoken friend, from earlier, to make sure you’re up. And you should consider sharing your calendar with them. 

Take breaks 

If you’re a person who loves to work, that’s great. But sometimes it can be to our detriment. 

There are times when you just need to take a minute and relax. You know, do nothing, stare out the window, listen to music, drool, call a friend. Put it in your calendar: “Drool, 2:30pm to 3:00pm.” It can be for an hour or just half that. But do it. 

It replaces the random water cooler conversations and gives our mind’s the reboot that it needs. It’s the breather that provides us the energy to attack our work with a refreshed mind, a new lens, renewed vigor. 

Noise-canceling headphones 

Good headphones are a must, especially if you have a family. Really. 

I love my children but sometimes they are loud. They like to bang on things and run up and down the halls—and SCREAM. And, with schools canceled for who knows how long, any extra tool that helps me focus and get into a flow state is gold. 

These are the headphones I use (affiliate). They are 24 karats of pure goodness. I’ve tested almost all of the other ones and these have the best sound and noise-canceling quality. 

If you’re not a listening-to-music-while-you-work type of person, that’s great. Don’t play music on them when you work. These headphones will give you the silence-is-golden-space you seek.

The noise-canceling feature is magical: They shut out all external sounds, making you feel like you’re on some serene mountaintop with Buddha doing downward dog with him next to a blossoming cherry tree. Really. 

Set your kids’ expectations

It sounds cruel to tell your kids that you need to do work and can’t be disturbed, but it’s actually good for them. 

Our eldest is in kindergarten and he’s insatiably curious and extremely social. We cherish him for it. 

But when I need to work, those characteristics we appreciate aren’t very conducive for me working. He wants to ask me questions about what I’m doing. He wants my attention. He wants to hang out, even when I have my golden noise-canceling headphones on (which don’t block out his tapping on my shoulder, by the way).

So I talk to him about work and let him know that when I have my headphones on, Daddy is trying to focus on something. It’s not a one-time conversation, but it happens far less now. 

We also gave him his own work, which includes writing and reading and math lessons that he does while mommy and daddy tend to their tasks. 

Closing thoughts about working from home

Many of you may be working from home for the first time. And it’s not easy to get into it in the beginning. But after you use some of these tools and figure out others that work well for you, it is one of the best ways to maximize your time and gain unparalleled freedom. 

Yes, these are extraordinary times. But they are also an opportunity to learn new skills and expand your ways of working. 

For more information about working from home, check out Remote: Office Not Required, a book about working remotely (affiliate). The founders of Basecamp, the project management tool, wrote it. They allow their entire team to live and work wherever they want. 

But no matter where you’re working, whether in cubical or in your undies at home, I hope you grow every day. 

And most importantly, stay safe and well. 

Lots of love,

John


 

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Cleft repair surgery and coronavirus—a story

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Our baby right after birth

It was a beautiful morning in the city, with spring in the air and magic around every corner.

But for me, New York didn’t blossom in my eyes; it was different for us. I was taking our nine-month-old baby in for surgery. 

He had a cleft palate (and lip, but that was already repaired). A cleft lip and palate is a birth defect where the child’s face doesn’t fully close up on the upper jaw and lip and nose while in the womb. For birth defects, it is the best kind to have because it’s repairable. 

So that seemed manageable—scary—but doable. We could stomach it. But that wasn’t the only issue. 

There was another one. 

COVID-19. 

Our family has taken this very seriously. The two weeks before the surgery, we kept our six-year-old out of school and don’t know when he’ll go back. We canceled all meetings, lunches, get-togethers, everything—except the surgery. The only time we leave the apartment is to take a walk, only outdoors, in the fresh air. We have been on lockdown and, while we are locked in, we wash our hands every five minutes, literally. 

So then, on that beautiful morning, I was venturing out with our baby to go to a hospital—A HOSPITAL—where the sick go, which was something major for us. People who are infected might be there. But we thought it best to get the surgery done since the surgeon is one of the best at this repair, so we plunged into the great unknown. 

But I was prepared. I had a few face masks, gloves, and a will to get us out of there without getting infected. 

When I was there, I was the only one wearing a mask. I was that guy: The weirdo. Being Asian might have made the whole scene that I was look worse, but I carried on. There were a few people who reacted. A nurse asked me if there was a reason why I wore the mask. I said, “There’s a pandemic going on.” And a young kid sneezed and then made an exaggerated sneezing and coughing noise as if to imply my mask was unnecessary. And I got a strange look here or there but, for the most part, it was business as usual. 

The staff was kind and courteous and understanding, but there was a feeling that I shouldn’t have been wearing the mask. One nurse even mentioned that there was a shortage of them. (But I kept on thinking about the two countries—Taiwan and Singapore—who have effectively stopped the spread of the virus, and one of the measures they used was getting everyone to use face masks.) Doctors and nurses washed their hands and used hand sanitizer. But no one washed their hands for twenty seconds as the CDC has recommended. (No one; except me; ok, I do it for more like fifteen seconds.) It was odd to have such a prestigious institution as that hospital not be more vigilant and take this more seriously, especially since this unit was only for children. 

I asked the nurses and doctors what they thought about the Coronavirus. They said that it was an issue. But it almost sounded more like a nuisance than a real problem. 

And they might be right. 

But I kept on thinking “What if it’s not just a nuisance? Why not practice more precautions? Why not wash your hands more, for longer, thoroughly? Why not wear face masks? Why not work harder to stop the spread?”

One conversation I had with a nurse concluded on this idea, “We have to live our lives.” 

That seems to be the pervasive thought that I see: “I won’t let some stupid virus stop me from living my life.”

And I’ve got to say that I agree with that in most crisis situations. In WWII, the motto, “Keep calm and carry on” is inspiring especially when you think about Londoners keeping their lives going even when the Nazis bombed the hell out of their city. That mindset of never letting fear stop the way we do life is beautiful. That’s courage. That’s good. Don’t live in fear. Hoorah!

But this is different.

Our bodies betray us. Anyone can be a carrier. All the virus needs is a warm body: yours, mine, your buddies. And our common behaviors spread the very thing that hurt our neighbors, friends, parents, people. With each handshake, kiss, cough, sneeze, we can advance illness, and even death, unbeknownst to us, and them. 

That’s how this virus works: it’s stealthy. People can be contagious even if they don’t feel bad—or asymptomatic. That means you don’t have to feel like death curled up next to you with some doctor in a hazmat suit hovering over you, laboring to keep you alive, to be infectious. No. You can just feel a little off, or nothing at all, and sneeze and give it to someone else. Just like that.

This virus grows exponentially. One person on average gives it to two. That’s crazy and freaky. So one becomes two, and two becomes four, then eight, and before you know it you have a hockey stick on a chart of people all with the virus. That’s scary.

We should all be scared. Because people die from this. Our parents, friends, loved ones, they can all get it and it can possibly be fatal.

If we don’t stop how we live our lives this virus can stop it for us, for our loved ones.

Eventually I walked our precious son into the unnaturally bright OR to have people cut our son open in order to heal him, but I feared less the knife and more the invisible enemy that was too small to see. 

After leaving him there, I waited in the waiting room. There were other parents and families. 

I did what I could to fill the time, making some phone calls, praying, and reading with my face mask on, with people looking at me, as they coughed and sneezed around me, as the hair on my neck pricked up, with fear. Dread filled me. 

The operation was supposed to take two hours, but it was solidly passed that. I was panicking. You know when you start thinking those irrationally dreadful thoughts? You know, the bad ones, really bad ones. That’s what I was doing. 

After two and a half hours the surgeon came out and greeted me with a smile. Relief washed over me. I smiled back. But he couldn’t see it under my face mask. I stood up and he told me my baby was well. I was so grateful.  

“They’ll call you back in a bit to see him,” he told me as he held out his soft, supple, well-manicured hand, only the way a world-class surgeon, with seven-figure hands, could. I clasped it. It felt good. It felt bad. And as he walked away, I followed him a few feet away and thrusted my hand under the huge hand sanitizer dispenser that hospitals have everywhere. And a white foamy cloud of liquid gold fell into my palm, with that distinct mechanical dispensing sound that they all make. Then I smeared it all around my hands, covering them over and over, not just removing any danger from them, but also washing away my fears. 

After a much longer time than I had expected, they finally welcomed me back. And when I saw him all I wanted to do was hold him and love him and be grateful all was well and hope that he was. 

After a few hours they discharged us even though we were supposed to stay the night. Before the surgery I told the doctor my concerns about staying overnight with the virus ramping up. He understood my concerns and put in the order to release us if our baby ate well enough. A baby not feeding is a real worry after they’ve had the roof of their mouth worked over. But he ate. And we were released. 

That was kind. Very kind. The doctor took some risk to let us out so that we could have some peace of mind. It was health care at its best, making caring for the patient the protocol, even if he had to break the protocols to do that. 

The fact is we don’t know if our baby, or I, have the virus or not. Before I left that morning I told my wife and our six-year-old son not to touch me when I returned: no hugging, kissing, etc. 

When I walked back home, they were both up, waiting for us. My firstborn drew a sign out of crayons to welcome us back. I felt loved even though we didn’t touch. We used words to express the feelings we felt to wrap one another with love and cover each other with the affection we carried in our hearts. 

We don’t know if we are carrying anything else in our bodies, but we will see. 

Regardless, it was good to be home. 

It still is. 

True strength

True strength isn’t about how much weight you can throw around in the gym; rather, it’s about your ability to carry the burdens of others.

It’s certainly not about how many people you can hurt, but it’s about those you can heal.

The strongest of us shouldn’t spend our energy trying to control anyone else but ourselves, mastering our own desires and impulses.

If you are strong, you serve. If you are powerful, you expend it on those who have less power.

Your strength should make others stronger.

Fatherhood: Reflections on the last days of summer with my son

Popcorn, beer, and fans in blue surrounded us. Summer sun was beating down; a cool wind comforted us; and the crowd roared when a homerun soared over the back wall.

His face glowed with hope and joy as we sat: My son and I perched in the Bronx. 

He knew that I didn’t like staying for a full game, but he asked me, “Dad, can we stay till the end?” 

Usually, I said no, giving a reason like we needed to get home to do something important. 

But a realization slapped me, hard. And it was this. The only summer I have with my son as a five-year-old is ending. 

“Make the most of it, fool,” I thought to myself. 

Making as many happy memories as I could with him became my aim, doing the things he wanted, even if they went against what I preferred. 

So we stayed. 

The innings were exciting. But witnessing the wonder and excitement in his eyes brought me the greatest joy. My son smiled, cheered, clapped, and laughed. And I couldn’t help but join him.

And I found myself not wanting to leave the game even after the last out. 

But we both left satisfied, hand-in-hand—father and son. 

How New Yorkers react to our five pound baby

New York can be a hard place. People are rushing around you, treating you as if you weren’t human, only something in their way. The bustle can be overwhelming. You can get lost in the shuffle and feel like a number. But living here with a family has been very different, especially with a newborn.

Continue reading “How New Yorkers react to our five pound baby”

The Saturday afternoon we lost our son

It was a beautiful Saturday afternoon, and we were in Washington Square Park, the iconic park in downtown Manhattan. The large marshmallow clouds marched in rows over the skyline; there was a slight breeze that brought comfort from the warmth of the sun shining down on the sea of humanity. The fountain was spraying water in the air, while kids danced and frolicked in the water. The landmark arc was white and seemed to glow as it towered over everything and everyone. People were everywhere: around the fountain, on benches, milling around, walking through, watching entertainers, on the grass in bathing suits. Dancers were dancing, musicians were playing, and the audiences were paying. Every creed, color, nationality seemed present. It was a collage of park, people, art, music, city, and nature. It was truly humanity at its best on a beautiful Saturday afternoon. 

Continue reading “The Saturday afternoon we lost our son”

Did our five-day old baby really need three spinal taps?

My wife just gave birth to our second son at home (on purpose).

And five days later, our pediatrician pushed us into the ER because our baby had a low temperature.

We thought he was just jaundiced (something a lot of newborns get but can be easily treated with special lights). But we weren’t prepared for what happened next.

Continue reading “Did our five-day old baby really need three spinal taps?”