Emma’s son Bertie was born with a unilateral cleft lip and gum notch. She reflects on their journey from sharing Bertie’s diagnosis with her wedding guests to adjusting to his new smile.
Like so many others, our journey with cleft started at our 20-week scan. Naively, we walked into the room excited to see our baby again & find out the gender, which we planned to announce to our friends & family at our wedding a week later.
Everything seemed to be going well until the sonographer paused for a while & suddenly said that she thought she could see a cleft lip. From that second, the whirlwind began.
I can still recall every moment and hour after that day, asking the Drs what I had done wrong & being petrified there were other serious problems with our baby. Fast forward some very nerve-wracking days, and we were told that it looked like an isolated abnormality but that his palate was most likely affected too.
We decided to share his diagnosis with all of our wedding guests before the day & combined a very emotional gender reveal within my husband’s speech. We wanted to celebrate our baby boy & not let the news stop our excitement about becoming parents.
We decided to share his diagnosis with all of our wedding guests before the day & combined a very emotional gender reveal within my husband’s speech. We wanted to celebrate our baby boy & not let the news stop our excitement about becoming parents. This was easier said than done at times, but with every scan, I felt more excited to hold my boy.
Luckily that day came two weeks before my due date & as soon as I held Bertie, all those fears disappeared. He was born with a unilateral cleft lip and gum notch. His palate was intact. We had a few tricky days feeding, but he flew once we got used to the MAM bottles.
Bertie’s surgery was postponed and on hold due to delays until he finally had it at eight months old. Adjusting to my baby looking so different has been one of the hardest parts of our journey, but now six weeks post-op, I can honestly say that heartache feels like a distant memory.
I love Bertie’s new smile, although I will always miss his first. Separate from his cleft, Bertie was diagnosed with plagiocephaly at six months old, so we are now riding the wave of his helmet treatment, but I hope he will forever be proud of his cleft scar, his journey, and the little boy he is growing up to be. He’s just incredible, and I wish I could go back to being pregnant & tell myself it will all be okay.
Thank you, Emma, for sharing your story!
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