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Jacob's Cleft Lip and Palate Story 

Was it going to be a boy or girl? Stacey and Rhianna were looking forward to their 19-week ultrasound so they could have an answer to this question. But, when doctors took a look at baby Jacob they found out more than that he was going to be a boy; they also discovered that he had a cleft lip and palate.

A cleft palate happens when the two plates of the skull that form the roof of the mouth are not completely formed. This can often be accompanied by a cleft lip that is a gap in the upper lip.

“When I first found out I had a wide mix of emotions. I was scared because I didn’t know what to expect when he was born, and my obstetrician didn’t have any answers for me. Not knowing what to expect made everything feel so much worse,” recalls Stacey. “I cried a lot the first few days after I found out, but once I went to the St. Louis Fetal Care Institute and met with the cleft nurse I felt a lot better about his diagnosis. The nurse took the time to review everything and I felt like most of my questions had been answered.”

In addition to meeting with the cleft nurses at the Fetal Care Institute, Stacey had ultrasounds to monitor Jacob’s growth and development and a fetal echocardiogram to ensure his heart was healthy. Depending on the severity of the cleft palate and lip, some babies need special assistance with feeding and breathing once they are born, and sometimes require a stay in the NICU (Neonatal Intensive Care Unit). Typically when they are a few months old, the plastic surgery team performs operations to repair the cleft. Because of this, Stacey and Rhianna also had consultations with a plastic surgeon, neonatologists, and a lactation consultant.

The team helped prepare Stacey and Rhianna for their son’s special delivery. “The cleft nurse went over how to feed him with the cleft bottle, when surgery would normally occur and what to expect after he is born,” says Stacey. “We had a plan for if he was eating well and one for if he was having trouble eating or breathing.”

Because a cleft palate can be very visually apparent when a baby is born, one of Stacey’s concerns was how people would react to her son’s cleft. “I didn’t know how I was going to share his pictures with other people without them being judgmental. I ended up posting a blog on Facebook talking about my feelings, and letting my friends and family know he was going to be born with a cleft lip and palate, that way people would know and prepare themselves if they needed to,” she explains.

Knowing the diagnosis before he was born also helped Stacey prepare for Jacob’s arrival, “I feel like knowing ahead of time made it a lot easier to bond with him once he was born because it was not a shock when I saw his cleft.”

Stacey also found a special resource, “One of my co-workers adopted a child with a cleft lip and palate, which I didn’t know until after I found out my baby was going to be born with the same thing. She took time to talk to me and was always available if I had questions. Talking with someone who went through the same thing was really nice, and was one of the biggest things I found helpful,” she recalls.

“The day he was born, when I heard his cry for the first time I felt like everything was going to be okay, like I didn’t have to worry about him anymore because he was here and he was crying. I had cesarean section, and when they took him to be examined Rhianna was able to watch. When she came back over to me all she kept saying was ‘he is perfect’. When I was able to see him for the first time I agreed, he was perfect,” remembers Stacey.

Jacob was born with a complete cleft lip on one side and notching on the other, and a complete cleft palate. Over the next few days he learned to eat on his own and was able to go home on the same day as Stacey.

Jacob is scheduled for his first cleft repair surgery soon. In the meantime, Stacey and Rhianna are enjoying watching their baby boy grow and develop at home. In addition to seeing his cleft on those early ultrasounds, Stacey noticed he always had his hands covering his face.

Now that Jacob is four months old he still has his hands in front of face, sucking and chewing on them, and laughing and giggling at his moms. They are also noticing that he has an early love of baseball, “It is crazy how much he pays attention to baseball games,” says Stacey.

“This experience has taught me that God doesn’t give you more than you can handle, my mom always told me that but it really is true. The thought ‘why him’ did cross my mind during my pregnancy but now that he is here I wouldn’t change anything about him. Everyone is born different and this is just something that makes him who he is,” she says. “The first time he smiled at me with that wide smile melted my heart. I am actually going to miss his cleft once it is repaired. I can’t imagine him without his little cleft lip, I feel like he is going to look like a new little boy.”

Update:

Since we wrote this story, Jacob has had his repair surgery and is doing great!


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