ACPA Family Services

Cleft-Craniofacial Community Stories

Lucas’s Story

Our cleft journey begins on the day of our 20 week ultrasound. Leading up to the appointment, we were excited to find out if we were going to be having a boy or a girl. At the appointment, the ultrasound tech took a number of pictures of the baby and announced that we would be having a boy! My husband, daughter and I were all over the moon to be adding a boy to our family. However, at the end of the appointment, when the doctor came in to finish the check up, we were told something very scary … there was something wrong with our baby. The doctor explained that based on what he saw in the ultrasound photographs, our son had a cleft lip and palate. Since we didn’t have experience with clefts, and didn’t know much about them, I went home and did some research online, trying to inform myself for what was ahead of us. A coworker of mine has a son born with a cleft lip, and she gave me some helpful information and websites.

At 8 months pregnant, we made our first visit to the team, to meet with a nurse and plastic surgeon. While there they gave us a bunch of material to read and also showed us bottles and nipples for babies born with clefts. I left that day feeling a little overwhelmed, but with lots of new and helpful information. After the visit, I went home and started purchasing a variety of the bottles they recommended so we could figure out which one worked best for our son.

Following the cleft diagnosis, we had an ultrasound at every visit to the obstetrician. This was preventative to make sure the baby was swallowing and healthy. We got to know the ultrasound tech, who always pointed out how chubby the baby’s cheeks were!

cleft lip, newborn, alveolar cleft

On April 7th 2011 Lucas Jace was born! When they placed him on my chest I instantly fell in love. The hospital where I delivered had a CHoP pediatrician on staff and after he was examined, it was determined that his palate was intact. Lucas had an incomplete unilateral cleft lip and an alveolar cleft (a cleft of the gumline).

When Lucas was 6 days old, we met with the plastic surgeon, and a week later, he was fitted for an IMO (Infant Maxillary Orthopedics) device to begin movement of his lip, nostril and gum non-surgically. For the first two weeks of Lucas’ life, we had tried what seemed like everything to calm him from his reflux and help him to eat. Now we had to make him cry while they made molds of his mouth and nose to fit him for his IMO.

Lucas got his IMO at three weeks old. The device looked like a retainer and worked in his mouth to help straighten his gum line and close the gap. Outside, it also had a piece that helped to prop up his nostril, which was slightly flat due to a wide cleft. Since a three week old baby obviously doesn’t have teeth and to help with the goal of bringing the gap in his lip closer together, tape and rubber bands helped to hold the IMO in place. For the next 10 weeks, Lucas would wear this appliance to help prepare him for his lip repair surgery. Looking back now, 10 weeks doesn’t seem that long, but it felt like an eternity. The first feeding was the worst … When I tried to put the appliance back in his mouth he gagged and threw up. After this, we kept it in for feedings, and only removed it when the tape needed to be replaced. After a few days, Lucas got used to the IMO – but he HATED the re-taping, and so did we. We had to be fast because it made him upset, but we also needed to be accurate for the best result. It was a group effort at times. A few days before surgery, he was drooling so much there were times I had to change the tape twice a day! I hated making him cry, but I knew we were doing it for the best. The change was very noticeable, and even after the first week, we could tell the IMO was making a big difference that would make surgical procedures much easier.

On July 6th 2011, a day before Lucas was 3 months old, I did the hardest thing I’ve ever done and handed over my little baby for surgery. Even though I knew he was in the best hands, handing him off to the nurses was heartbreaking and the wait during the procedure wasn’t much better. Surgery took 2 ½ hours, and I will never forget seeing my baby for the first time in recovery. I just wanted to squeeze him and kiss him all over, but holding him for the first time was a little bit scary, too. He was hooked up to an IV and had NO NO’s on his arms. I started to cry when I sat down with him because he was groaning and I just wanted to take all his pain away. The next day, he was released. And within a few days, he was smiling and laughing again, which made us all feel so much better.  A week after surgery the doctor removed the temporary stitches and a stent from his nostrils, and the results were amazing.

Lucas will have a second surgery when he is between six and eight years old, a bone graft to correct the alveolar cleft. Now, coming up on his first birthday, Lucas is an incredible little boy. He has shown our whole family strength and courage, and we all love to see his beautiful smile – though we all agree that there will always be a piece of us that misses his “original,” extra-wide smile, too. I consider myself lucky … not many people can say they got to fall in love with their baby’s smile twice in the same year.