Cleft Proud in our 1 in 700
Carter’s Cleft Story
Luca Cleft Story
Jetts Cleft Story
Carter’s Cleft Story
Carter Riley Richardson was born on November 5th, 2012 with a bilateral cleft lip and palate. This came as no surprise, as we learned of his cleft during our 20 week ultrasound. The news of our child’s cleft came hours before our gender reveal, so we knew of the cleft before we knew the gender of our baby. Carter’s dad and I knew little to nothing about cleft lip and palate. When the doctor asked what questions we had, we both stared blankly still absorbing the news. It felt like a punch in the gut and the idea of this “perfect” baby came crashing down, along with our whole world at that moment. We held our tears until we no longer could. We wiped them away and put on smiles for the photographer waiting down the road to reveal our baby’s gender. We continued to hold back tears the remainder of the evening as we celebrated with family and friends. From that day forward, the remaining 20 weeks of my pregnancy was nothing short of worry, heartache, doctor’s appointments, and planning.
That is until Carter finally arrived. He was perfect. Holding him and seeing him for the first time washed all of that heartache away. We certainly had a long road ahead of us, but our son was here and he was thriving and healthy. Carter struggled with eating at first, so the NICU assisted with a feeding tube during the first day. Once Carter got the hang of the Habberman bottle, he was eating like a champion and we got to go home. We snuggled him and loved on him for 3 weeks before he was fitted for his NAM (nasal alveolar molding). This was a voluntary process that we that opted to do, as we knew it would give Carter the best possible results for repairing his cleft. Carter had weekly adjustments and a daily taping routine to mold his gum line and lip into a better position prior to his lip repair. There were days that I cried and wanted to give up, as I hated seeing my baby go through the process. But we stuck it out and we sure are glad we did!
Carter had his lip repaired at 6 months of age. Handing our baby over to doctors was no easy task. We waited for several hours as our surgeon and other members of Carter’s cleft team worked diligently to repair his lip. The outcome was beautiful, but boy did we miss his “first” smile. Saying goodbye to Carter’s cleft was an unexpected sadness. We had waited so long and worked so hard to have our son look “normal.” We longed for the days that people didn’t stare at him. And yet there I was, mixed with emotions about saying goodbye to the only smile I knew.
Carter was in the hospital for a few days, learning to eat and drink from anything that didn’t require suction. We got to go home after Carter was maintaining his fluid intake and his pain was minimal. For the next 6 months, we worked on eating and drinking without the NAM and planned for Carter’s next surgery in a short 6 months. His palate was repaired around 12 months. We went through a similar surgery process and hospital stay. This one was much more difficult once home. Carter’s mouth hurt and it was difficult for him to drink. We got through it and were so thankful to have his first two surgeries behind us!
Carter is now 8 years old and has been through nutritional and speech therapy over the years. He has a phenomenal Cleft Team at Children’s Hospital in CO. We have annual visits where we meet with our team of doctors and go over future plans and surgeries. Carter has many surgeries ahead. His next major surgery will be his bone graft. Over the next few months, we are expanding his palate in preparation for that surgery. We know there are more surgeries in the future, but for now he enjoys life with no major doctors appointments. Most days we forget about Carter’s cleft and he’s no different than any other kid. Carter does remind us that he is smart, handsome and a stud in sports. We ask him why he is all of those things and he always responds, “because I have a cleft!”
We are so proud of our son. He is absolutely perfect and we wouldn’t change his cleft or who he is for anything. He is so special to so many people. Our family and friends are all advocates in the cleft community. We are Cleft Proud and Carter is our 1 in 700.