I will always remember the moment I learned I was pregnant for the second time. My first pregnancy ended abruptly in a heartbreaking miscarriage, which plunged me into four months of deep sadness followed by five months of fertility treatments. I walked into the clinic feeling bloated and utterly miserable, as if my ovaries were the size of basketballs, clashing together with each step.
“Have you taken a pregnancy test?” asked the nurse at the front desk. “You must be pregnant!”
The test stick showed two lines almost instantly. With tears streaming down my face, I handed it over to the nurse, who joyfully exclaimed, “I knew it!” The waiting room erupted in applause.
I felt an immense wave of relief wash over me.
At five weeks, we discovered I was expecting twins; by 12 weeks, we learned they would both be boys; and at 16 weeks, we captured clear images of their tiny profiles. I proudly displayed those pictures above my desk at work, yet I couldn’t shake the unsettling feeling that Baby B’s profile looked off. Baby A’s profile appeared perfect, while Baby B’s resembled Darth Vader’s helmet. I reassured myself that it was likely just an odd angle.
Since we already knew their sexes, I thought the 21-week ultrasound would hold no surprises. The doctor spoke highly of Baby A’s growth and pointed out his developing features. Baby B was growing well too, but Baby A blocked most of the view. It was at this moment that the doctor confirmed Baby B had a complete bilateral cleft lip and palate.
My heart sank, and I felt dizzy as the doctor and my partner discussed the medical details of our baby’s condition. I was overwhelmed with confusion and fear. My instincts about Baby B had been accurate.
My partner, who was ironically training to be an oral surgeon, tried to explain what a cleft lip and palate entails. During the sixth to tenth weeks of development, the roof of our baby’s mouth and the two sides of his upper lip had failed to fuse. According to the CDC, nearly 4,000 babies in the U.S. are born with some form of cleft lip and/or palate each year, making it one of the most prevalent congenital conditions.
The challenges didn’t stop there. I was already experiencing contractions, and my doctor prescribed bed rest. My long-awaited pregnancy was spiraling into a nightmare.
I camped out on the couch, crying for three days. My partner attempted to describe what our baby might look like, but we never got a clear image due to Baby A’s positioning. Since babies with clefts can also face heart complications, the doctor referred me to a pediatric cardiologist for a heart ultrasound. Fortunately, it showed no defects, but the cardiologist would be on call during the delivery just in case.
The day of delivery arrived five and a half weeks early. After Baby A was born and taken to the NICU, my cervix closed, keeping Baby B snugly locked in place. I lay shivering in the operating room, consumed with worry for three hours until Baby B finally made his entrance.
When he arrived, he was adorable—a round face, bright blue eyes, and a small bump beneath his nose where his lip had not fused.
The subsequent weeks were emotionally challenging. He struggled to nurse due to an inability to form the necessary seal with his lips. As I took the boys out in a stroller, some passersby would do double-takes and ask, “What’s wrong with your baby’s nose?”
Today, at the age of 12, he has undergone four surgeries related to his cleft and will need more as he grows. He has participated in speech therapy and will eventually require implants to replace missing teeth. Through genetic testing, we discovered that his cleft resulted from a deletion on one of his genes, a factor we could not have anticipated.
Initially, I viewed having a child with a congenital condition as a disaster, but I now recognize it as a blessing. He is a resilient, intelligent young man who has taught me to be a more compassionate and understanding parent.
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Summary
The author recounts her journey through a difficult pregnancy after a miscarriage, only to discover that one of her twins would be born with a cleft lip and palate. Initially overwhelmed by fear and confusion, she ultimately embraces the challenges and sees her son as a source of strength and resilience.
Keyphrase: congenital condition awareness
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