Cleft & The Plan

What is a cleft lip and palate?

Cleft lip and/or palate is one of the most common birth defects in newborns. Basically, early in his development, the palate and lip (and associated structures) form from the side and fuse together in the middle. Elijah has a bilateral cleft lip and palate. This means these structures did not fuse together when forming, resulting in a split or opening in his lip and in his palate (the roof of his mouth), as well as his gumline. "Bilateral" refers to the fact that it's split on both the right and left sides of his mouth. Some babies only have a unilateral, or one-sided cleft. Elijah's cleft on both sides goes all the way to his nasal cavity/nose. So, the opening in his lips are continuous with his nostrils and the opening in the palate goes all the way to his nasal cavity.

Cleft Complications

The cleft does not hurt Elijah, but it makes feeding more difficult. He basically does not have much suction due to the cleft in his palate. We use special bottles that are designed to help babies with clefts, and Elijah eats pretty well now. He is at a higher risk for aspiration and ear infections, but otherwise doing great. One thing we didn't expect was that neonatal teeth sometimes erupt. A few days after birth, Elijah had a tooth erupt out of the left side of his premaxilla which fell out at 1 week of age!

Cleft Treatment

Last Monday, we met with the comprehensive cleft team at Riley (Indiana University Health Children's Hospital). The team includes several people: a plastic surgeon, nurse practitioner, feeding/speech therapist, pediatric dentist. We requested Dr. Roberto Flores to be our plastic surgeon as Riley has three total. We did some research and several independent resources raved about him. Very basically, the repair involves multiple surgeries over time. First, around 5 months or so, Dr. Flores will repair Elijah's lip to make it whole. Then, by a year, they will close his palate. After that, surgeries vary and may involve orthodontic work, repair of his nose and more. We will meet with the team periodically and once his lip surgery date is determined, I will let you all know.

NAM

Before Elijah arrived, our friend Shanda sent me a blog of a couple that has a baby with cleft lip and palate. Their beautiful blog inspires this one heavily! They are such an inspiration to be able to see what's ahead through the eyes of a mother. Through their blog, I learned about this thing called NAM (nasoalveolar molding). Without going into much detail, it is basically a pre-surgical device that gets molded to his palate and eventually his nose to help bring everything closer together before the surgery. This combined with taping of his lip will do some major transformation before surgery. The main goal is to set him up for the best surgery possible and hopefully to reduce the number of surgeries he would need after his palate repair (mainly the nose and orthodontic stuff). As I read more about this device and physically saw the transformation pre-surgically through a series of pictures, I knew I wanted it. It sounded like very hard work with daily cleanings and weekly adjustments at the orthodontist, but it also sounded like hope. I will give a full post to NAM soon because it's a crazy story in and of itself, but in this post, I wanted to focus on the overall treatment plan. 

Finally, I will leave you with one of my favorite pictures of Elijah so far (above). I love his face. This may sound crazy to you since we are going to go through so much work to close the cleft and get his face to look as whole as possible. Sometimes I don't understand it either. How can I love it (the way the cleft is part of his face/looks) and want to fix it all at the same time? I think this must be how God see us. He loves us as we are - broken, not whole. Yet he sees us as beautiful and valued. He doesn't expect us to fix our selves in the same way we would never expect Elijah to fix his own cleft. And yet God brings about spiritual wholeness/healing to our brokenness through his most painful work at the cross and through difficult journeys in our lives that teach us to surrender and lean on him. 

Philippians 1:6 - And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ. 

1 Thessalonians 5:23-24 - Now may the God of peace himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ. He who calls you is faithful; he will surely do it.