Fourteen years ago, my life was changed in ways I could have never imagined. Pregnant with my third son, I was thrilled to be bringing a new baby into the world and was envisioning the endless possibilities for his future. After a tough pregnancy, Lucas decided to come into the world a bit early, but with every indication that he was going to be a perfectly healthy baby. Normally after having a baby, the staff lays the baby right on the mother, but Lucas was taken away immediately to be further evaluated. I had no idea what was happening and was scared that something was terribly wrong with my baby.
By the time we left the hospital, he had lost weight. However, there was hope as I left with an appointment already lined up for the next day with the Cleft Team at the Children’s Hospital of Philadelphia (CHOP). We spent the full next day with their nursing specialist finding the right feeding system for Lucas. Fourteen years ago, there were only three options for special feeders for babies with cleft, and they were not cheap. One special bottle could cost around $20 at the time. With a newborn going through six to eight bottles a day, and having to replace them here and there, it was an additional expense of almost $200 every few months. It was an unexpected cost that I was not prepared for, but I was willing to do whatever it took. CHOP helped as much as they could, but resources were and still are limited.
We were at CHOP weekly for the first three months of his life. Mostly to keep on top of his feedings and weight gain, but to also get ready for his first surgery. To prepare for his first surgery, they fitted Lucas for a NAM (nasoalveolar molding), which was a medical device used to try and reshape the gums, upper lip, and nostrils. Lucas wore the NAM all day, every day, which was held in place with medical tape fastened to his cheeks. The NAM device also helped with his feedings, by providing a palate he didn’t naturally have.
NAM device; Lucas at 1 month wearing the NAM; Diagram to show how the NAM was worn.
By three months old, Lucas had his first surgery to do his lip repair. Having surgery at any age is always scary, but having to watch your infant go through all of this, evoked such a whirlwind of emotions for me. By 10 months old, he had his palate repaired, just in time to start trying soft solid foods. With most patients with cleft, there are usually other ENT-related issues that occur, especially as they start to grow. Lucas struggled with hearing in the early stages of his life, which prompted surgeries to get tubes put in his ears. He also experienced some speech issues, which required routine check ins with his speech therapist.
Lucas is now 14 years old and in his short life, he has gone through more than an average adult. He has had at least 12 major surgeries in his life and is not done yet, with the next procedure for a nasal/septum repair already scheduled for later this year. And an additional jaw surgery once his facial growth has completed.