我儿子天生唇腭裂，但他的笑容很完美

那是我的生日。我最不想和任何人分享的事情。但是我想要的和我得到的是两码事。

在我36岁生日的前一天，我进行了为期39周的体检，我的血压非常高，我的妇产科医生让我回家卧床休息。那天早上，我躺在床上，我的丈夫威尔和我当时四岁的儿子诺亚用拥抱和亲吻祝我生日快乐。按照指示，我打电话给我的妇产科医生要检查结果。他诊断我患有先兆子痫，并在当天晚些时候要求紧急剖腹产。

我以前经历过。四年前，当诺亚出生时，他的脖子上缠着脐带，我做了一次紧急剖腹产。所以我想我知道会发生什么。

手术室的气氛很愉快。当医生开始剖腹产时，护士们甚至开始唱"生日快乐"。

RELATED:当我的婴儿出生时我学到的是唇裂啊！"这是一个……"医生一边说一边把我的男婴从我体内拉了出来——但随后他就安静了下来。震耳欲聋的寂静。医生示意护士来接孩子。没人说一句话。

"这是怎么回事，"我问，而房间里的其他人盯着。婴儿开始哭了，但我仍然没有看到他。

"一切都很好，"威尔安慰地说。他在哭。他没事。

我几乎要歇斯底里了，因为我不知道发生了什么。"我的孩子怎么了？"我记得尖叫。我的医生镇静下来，说：'嗯……嗯……他很好。我们在你的任何一张声谱图上都没有看到这个，但是看起来有一个小裂缝。'

什么裂缝？利普。味觉？轻微？比如不引人注意？我只听说过关于裂缝的不好的故事，我想，'我在怀孕期间做错了什么导致了这个？但他确实说了"轻微",对吗？

检查完宝宝，儿科医生走过来问我，'你想看看你的宝宝吗？'

没错。这是什么问题？"把我的孩子给我!"我喊道，仍然在o

perating table.

"Okay, but please understand that what you're going to see may be shocking if you weren't expecting it," she warned. She handed the baby to my husband first. Will took the baby into his arms, still just out of my view, and started to cry. He kept repeating, "It's okay. It's going to be okay." When he bent down and showed me our son's face, I blacked out.

I woke up in recovery, not sure whether what had happened was real. The baby wasn't with me. My doctor pulled up a chair and started by saying, "I'm so sorry. I don't know how we missed this on the ultrasound. It appears to be a complete, unilateral cleft." So much for slight.

"But don't worry," he continued. "With a simple surgery, they can fix it right up and you won't be able to tell … "

I couldn't stop all the questions popping up in my head. A "simple surgery?" I'd known someone who had a child with a cleft palate, and it didn't seem like a "simple surgery."

"Was this something you could even pick up on an ultrasound?" I had been considered high-risk because of my age and weight and had more ultrasounds than I did with my first pregnancy—even the fancy 4-D one. After my 20-week anatomy scan, I had been sent to a specialist for what they thought was a problem with his heart, but nothing like a cleft palate had ever come up.

My doctor continued, telling me that the hospital has one of the best craniofacial plastic-surgery teams in the country. He said he'd call the team coordinator in the morning. I felt a little reassured, but Will and I still had no idea what we were dealing with.

Later on, as I sat in my bed, feeling scared about the unknown future that lay ahead for my son, a nurse brought him in. She said, "You've gotta try to breastfeed!" and placed him on my chest.

• RELATED: My Son Was Born With Craniosynostosis—Here's What Parents Need to Know About the Birth Defect of the Skull

I got my first clear look at Jacob. He had a huge gap on the right side of his mouth, all the way up to his nose. His right nostril was completely flat. I later found out that this was a 30-millimeter gap. It looked like a huge wide smile. I continued my gaze up the rest of his face, and for the first time, looked into his eyes. He had the biggest, most beautiful brown eyes I had ever seen. At that moment, we recognized each other. I could tell he knew me. It was like he was saying, "Hey, Mom," with his eyes.

He rooted to my breast and tried to latch. Nothing. "What's going on?" I asked the nurse. "Can he even latch like this?"

"Sometimes they can, sometimes they can't. You have to at least try so he gets the colostrum, but you may have to pump," she explained. After several very painful tries, I gave up and asked for formula.

After two more traumatizing days of being forced to try to nurse and not getting the care I knew I needed for the sadness and anxiety I was feeling, we finally received a call from the coordinator of the hospital's cleft lip and palate team. She was on her way back to New York after a vacation and said she'd swing by to say hi on her way home. It was late and rainy on a Sunday night, so Will and I figured we would see her at some point the next day.

But at 10 p.m. on that dreary October night, a tiny woman wheeled her enormous suitcase into my recovery room and said, "Congratulations on your baby boy! He's adorable!" That was the first time anyone congratulated us. My poor baby never got the proper welcome he deserved on the day he was born. Regardless of his birth defect, Jacob was a beautiful child, and his entrance into this world deserved to be celebrated.

child cleft lip palate Credit: Courtesy of Tara Lustberg

She sat there and talked to us for more than an hour. This was the first conversation that wasn't filled with negativity and what needed to be fixed. She validated our emotions, and reassured us that we were a team and would be in very good hands. It was the moment that changed everything. She gave us hope. I felt uplifted. That woman turned out to be our angel, and from then on, I was taken care of so completely by the medical team. She has become part of my family, and to this day, we still speak at least a few times a month.

mom hugging son Credit: Courtesy of Tara Lustberg

My little birthday thief is 5 now, and he's had three surgeries so far (for his lip, gumline, nose, palate, and inner ears). He'll need future surgeries as well (for his nose and possible bone grafting of his gumline).

It hasn't been easy. But I no longer see that he was born with a birth defect. It doesn't define who he is; it's just something that happened to him. It's part of what makes him the special, strong, and fearless little boy he's growing up to be.

• RELATED: All Birth Trauma is Valid: Here's How to Have it Recognized and Get the Support You Need

My greatest birthday gift takes a comb and styles his hair to one side, looks up at me with those huge brown eyes and big, beautiful grin, and asks in his sweet, innocent little voice, "Mommy, am I puhrfict?" "Yes, baby," I answer, as tears fill my eyes, "you have no idea how perfect you are."

This article originally appeared in Parents magazine's December 2021 issue as "Born Perfect." Want more from the magazine? Sign up for a monthly print subscription here

Parents magazine

• By Tara Lustberg