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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We could have been homeless—A story

It was the end of February, and I was scared.

Something was going on in China. It was shrouded and strange but scary. People were getting sick, and many were dying, and it was growing at an alarming rate.

I started to suspect that it was already in NYC. “I mean, how could it not be?” I thought. It’s a global city, and the number of people who do business in China and have connections there was numerous.

So the four of us in our family self-quarantined and social-distanced, keeping our kindergartner out of school, even though the school called us to tell we should be sending him there and that he would get unexcused absences. But we didn’t care. We cared more about his life, his health.

Also our second child, our baby, had a cleft palate and lip. The latter was already repaired, and the former was scheduled for surgery on March 18th.

But it didn’t feel right. We felt this urgency, that it was only time before NYC was in a panic.

So we moved up the date. They had the 9th open. And we took it and prayed that nothing would happen to cancel it before then.

We were also planning on moving out of NYC even before the pandemic. But that changed these plans as well. After moving up the surgery, we moved up the move and the closing date for our new home in St. Louis. The latter moved from mid-April to March 20th, and the movers would come to NYC on the 18th.

So everything was changed and set.

And now it was the beginning of March, and all we could do was wait.

The first few cases occurred in NYC. But there wasn’t panic yet. People were still going out. No one was wearing facemasks. Bars were still full, restaurants bustling. The city was still the city.

The 9th finally came. Donning a facemask and latex gloves, I walked an hour with our baby in the stroller, to avoid Ubering, to the hospital. I marched into the hospital, ready to do battle against this invisible enemy. No one else wore a mask.

The surgery was a success, and the doctor let us out early because he saw that we were seriously concerned about this virus.

I walked home that night and was greeted by my wife and firstborn. We were happy and relieved and tired.

The following days my wife and I were busy pumping various painkillers into our baby (since he had the roof of his mouth carved up and put back together) and packing to get ready for the movers.

All the while, the cases were jumping. People started dying. We were worried.

The surgeon wanted us to come in for a postoperative appointment. We tried to get out of it. But he wouldn’t let us.

So on March 16th, I went, wearing another facemask. It was quick and easy. Our baby looked great. But then the doctor told me news that sent shivers down my body.

All elective surgeries were canceled that week by the hospital to get ready for the onslaught of patients from COVID-19.

If we hadn’t move up the date for our surgery, it would have been canceled for some indefinite date.

And even now, as I write this, it looks like we would be waiting a very long time to get rescheduled, and we would have needed to go back to NYC to do it.

Instead, we were on the other side and done and just making sure our screaming baby wasn’t in too much pain while we waited for the movers. They arrived on the morning of the 18th and quickly started moving our things into the truck.

Right after they got there, I went into New Jersey to pick up a Suburban we were renting to drive back to St. Louis. We didn’t want to risk flying.

Riding my bike down to the ferry was wonderful. The air was crisp and the Hudson River was on my right and the city was on my left. But it was already changed. It was quieter, more fearful, less certain.

I was the only person on that ferry during rush-hour.

After picking up the car, I got back into the city quickly since there was very little traffic. People were already working from home.

As the movers were finishing up, I wiped down the whole Suburban and started packing it with all of the stuff we needed for the next couple of days. (It’s amazing what a family of four “needs.”) And we had our 80lbs dog and cat.

Driving through the night while still dosing up our baby with a concoction of Motrin and Tylenol, was interesting. But we made it to St. Louis the next day, the 19th.

After staying a night in an Airbnb that a friend let us use, we were set to close on our new home on the 20th. We requested a mobile notary to bring us the documents to sign for our new home. He did.

The movers were supposed to move us in on the 21st, but they said that they could do it on the 20th. So on that afternoon, after we closed, we were totally moved in and unpacking.

On the 20th, NYC was locked down.

On the 23rd, St. Louis was locked down.

If things were off by a couple of days we could have been trapped in NYC; or worse, we could have been homeless. But things worked out, miraculously.

Sure, I guess we could say, “Wow, we are amazing to have done all of that,” but that would be ridiculous because we had no idea what we were doing. We were like a blind person wandering around NYC for the first time: Lost.

It was a Divine hand that was guiding us. It was God’s grace that held us. We were objects of mercy.

The timing was too perfect to be planned.

Right now, we are comfortably situated in our home working, playing, living. We’re still quarantining and healthy. And as each day passes, we are more grateful.

For those of you who prayed for and thought about us, thank you. We really needed you.

We hope you are well, too, friends.

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.