WHAT WE’VE LEARNED ABOUT HAVING A BABY WITH A CLEFT LIP AND PALATE

Our fifth little boy Rush was born with a cleft palate and a cleft lip. It was a big shock to us as we have four other healthy boys and never expected the fifth to have any special needs or differences. We’ve learned a lot since we found out about his cleft. We’ve learned a lot about ourselves, managing life’s expectations, and then also how to care for and what to expect for a child with a cleft. As we go through our journey I want share what we learn and our experiences so that we can help to normalize differences and also to help other parents in our same situation. Today I’ve got a lot to share from Rush’s birth up through his first six weeks of life. I’m calling this post Cleft 101 because I’m trying to share in the simplest of terms, everything I have learned about having a baby with a cleft lip and a cleft palate.

 

The hard part about a birth defect like a cleft, and maybe all birth defects, is that although you might have a little bit of information from an ultrasound- you don’t have all of the information. Ultrasounds are not super detailed or every 100% accurate, so while we knew that Rush would have a cleft lip and palate, we didn’t know much more. We didn’t know the size of it or exactly how far it extended into his nose or how it would effect him. We didn’t know any of that until he arrived. 

After we learned that our baby had a cleft at our 18 week ultrasound we had many more follow up ultrasounds. The specialists told us what they could see and offered to set us up with a consultation before birth with our cleft team. They really could only offer us general information and so I opted to wait until after the baby was born to get started with our new doctors and team. 
I was induced at 38 weeks and you can read his birth story HERE, As soon as he was born we saw how big his cleft was and it was bigger than I anticipated. We saw his cleft palate and it was kinda scary to see to. I wasn’t sure what to expect, but it was definitely different than a normal baby mouth. The best part though was that it was so easy to look past his cleft almost right away. We were able to see this sweet tiny baby who was ours. And his cleft wasn’t scary. He was still cute and warm and smelled good and felt so good to hold. He was missing some facial tissue, but he was still 100% perfect. 
 

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