In September of 2015 at our 20 week ultrasound, we found out that our precious miricale baby would be born with a severe bilateral cleft lip and possible cleft of the hard and soft palate. We were devastated to learn that this baby we had waited for was going to have to face many challenges so early on in life and for the years that followed. Right away we were directed to our cleft team who walked us through every step of the way. We put the nursery planning on hold, and instead, spent the next few weeks interviewing surgeons and meeting with the doctors who we will have to soon hand our baby over to. We joined a Facebook group, "cleft mom support" where we learned an invaluable amount from other parents who have gone down the same path as us. We looked at before/after pictures of their babies, compared sonogram pictures and got ourselves as prepared as we could for what was to come. We were nervous, of course, but felt armed with knowledge and a plan. On January 5, 2016 arriving 15 days early, our sweet Gerard Francis came into the world and changed our lives forever. From the moment I saw him, I knew he was meant for our family. They quickly confirmed he did in fact have a bilateral cleft of the hard and soft palate along with the bilateral lip. At that moment, the moment I had been so anxious for, the nerves just seemed to float away and I couldn't help but love that sweet face that I tried to picture in my head for months. Gerard was put in the NICU to make sure he was feeding properly. We learned how to use two kinds of special bottles to feed him with. Since cleft babies do not have suction, these bottles are essential for feeding. He impressed all the nurses and proved to be a feeding champ and was quickly released from the NICU. Two days later we went home and the marathon of appointments began. We were taught how to tape his lip down in the hospital and were instructed to start right away. (I'll admit I waited a week so I could savor those soft cheeks for a few days!) At one week old we met with our dental team and he got fitted for his NAM (nasalavelor molding) device. This device would help him take his bottle and over time, help shape and mold his lip to prepare for surgery. We taped his lip and secured his NAM in with denture glue at least twice a day. As he got bigger, stronger and smarter, this became quite the task! The results we received with the NAM were extraordinary and we owe it all to the patience and talent of our dental team. They became like family to us and we are forever greatful for them. On May 16, 2016 at just 4 months old, Gerard went in for the first of many surgeries, his lip repair. The smile that we once worried about and tried to imagine during pregnancy, was going to change forever. Believe it or not, I didn't want it to change! I had fallen in love with that wide smile of his and was not ready to see it go. I walked my baby into the operating room, layed him down, and waited for him to fall asleep. As I walked out of the scary large silver doors, tears flooded my face. All we could do was wait. 4 hours later we were reunited with our boy, this time with his forever smile. We got to fall in love with him all over again! Recovery was not easy, but luckily we chose the most AMAZING surgeon, Dr. Rachel Ruotolo. She is an angel here on earth and an absolute blessing to our family. She held our hand through the whole recovery process. Being a mom of little ones herself, she was compassionate and knew exactly what to say. No question was ever too silly for her. We were able to text her personal phone day or night with questions or concerns. She would check in at 11pm and then again at 5am to see how the night was. There are no words to describe the love we have for her. We are so lucky! On October 24, 2016 Gerard went in for his second surgery to repair his soft palate and place an semi permanent plate over his hard palate. In October 2017 he will have the plate removed and the hard palate will finally be closed. He had ear tubes surgically placed and has been in weekly speech services since 2 weeks of age. He will need a bone graft right around school age and will need some possible revisions down the road. Today, Gerard is an insanely happy, funny and sweet 16 month old who loves Daniel Tiger! All the worries we once had are gone and we just take each passing day step by step. Without the help of our cleft team and team of gifted surgeons and doctors, we would not be where we are today! We are so fortunate to have access to all of the medical care that has provided him this wonderful life. On May 16th, the day he received his forever smile, we celebrate and call it his "smileversary". A reminder of how lucky we are to have him and all of the doctors we have grown to love.
Unfortunately, this type of exceptional care that Gerard receives his not available everywhere. Every three minutes a child is born with a cleft lip or cleft palate – and many families can't afford the surgery they desperately need. In many places, children with cleft conditions are abandoned or abused. Many times they have trouble eating and drinking and can struggle to survive. Those that do can face a lifetime of shame and torment. I have created this Smile Fund to raise money for Operation Smile – a global medical nonprofit organization that provides free sugeries for children around the world born with cleft lip, cleft palate and other facial deformities. My goal is to raise $240 which will provide one life changing surgery and renewed hope to children around the world.
Every Smile has a story, and I thank you for taking the time to read Gerard's story.
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