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.
Finding About the Cleft
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.
Cleft Birth, at Home
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.
John, that is a lovely story. So glad for you all.
Thank you, Linda. Appreciate you. Hope you’re well.
Oh my goodness! God bless you and your family. Your son has inspired me so much
Thank you so much!! Blessings and God’s love on you, too.