Meet our happy and oh-so-silly boy, Tulsen!
Tulsen was born on September 29, 2023, with a unilateral cleft lip and palate. The first half of my pregnancy with him felt like an absolute dream. Every test —ultrasounds, genetic testing, and endless bloodwork —all came back normal. Walking into our 20-week anatomy scan, I could never have imagined walking out feeling like the whole world had stopped spinning. Hearing the words “cleft lip” was something I wasn’t prepared for —it had never even crossed my mind. I was perfectly healthy, and my husband and I had no family history of cleft. How could this be happening?
With the diagnosis of a cleft lip came the possibility of a cleft palate, which couldn’t be confirmed until Tulsen was born. The following weeks felt incredibly lonely. I felt like no one could understand what I was going through except for my husband, who was trying to hold it together for both of us. Desperate for guidance, I reached out to the only person in our town I knew who had a baby with cleft. I was eager to learn everything she could share — where to start this journey, who to seek for medical care, what they used for feeding, and the timeline of surgeries.
From those conversations, the Snyder Family Cleft and Craniofacial Center at Wolfson Children’s Hospital (an ACPA approved team) came highly recommended. My husband and I made the call just days later. From that very first phone call, we knew we had found the right place. Knowing our son would be in the best hands finally gave us a sense of peace. This team truly cared. They understood the overwhelming emotions parents face after a cleft diagnosis and assured us they would be with us every step of the way.
The following months were filled with appointments and conversations with the team to prepare for Tulsen’s arrival. The team provided us with invaluable resources, including cleft support groups and the ACPA website, which I’ve come to know like the back of my hand. I spent countless hours reading articles on feeding techniques or surgeries —resources that were crucial for helping us hit the all-important 10-pound milestone by three months for his first lip repair surgery. Thanks to this support, we finally felt confident in providing the care he needed.
Fast forward to five months old: Tulsen was thriving and scheduled for his first surgery. Over those months, we had fallen in love with his wide smile. What once felt like excitement to have his lip “fixed” quickly turned to sadness, as we weren’t ready to say goodbye to that smile. I thought nothing could compare to the emotions I felt after his diagnosis —until I sent him into the operating room for the first time. Seeing him wheeled out of surgery with his new smile was the most bittersweet feeling I ever experienced. Tulsen has healed so well and loves showing off his new smile. It’s hard to believe that he ever had a wide smile, and I often find myself looking back at old photos to never forget his first one.
At just two days shy of 11 months old, Tulsen underwent his second surgery to repair his palate. His recovery was another challenging chapter, but once again, he showed incredible strength and resilience.
With his first birthday recently behind us, we had so much to celebrate. While his first year was filled with challenges, it was also marked by so many momentous moments. The best is yet to come for our cleft cutie, and one day, this will be his story to tell.
Kaylie (Tulsen’s mom)
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