We were anxiously awaiting the birth of our second child in Nov. of 2007. My pregnancy was a long one, but nothing out of the ordinary. My husband, Brian, and myself were very excited about bringing home a new baby to our family. Our daughter Ellie was also super excited to find out if we would be bringing home a baby sister for her or a baby brother. We wanted to be surprised….and that we were in many ways that we never expected. Reid James was born on November 3, 2007 weighing in at a whopping 9 lbs. 6 ozs. I will never forget my doctor’s voice when she said, “I don’t want you to be alarmed in any way. But I need to tell you that your son was born with a cleft lip.” She assured us that this was a cosmetic issue that could be fixed. Cleft lip? I was thinking in my head over and over of what exactly a cleft lip looks like on a child. Hadn’t I seen pictures of kids in magazines before with before and after pictures of them with their clefts??? I was trying to hard to imagine what Reid was going to look like, and my husband who had already seen him looked me in the eyes and stated so matter of factly…..”You don’t need to worry. He is just perfect.” And that he was. When the doctor turned Reid towards me and handed him to me for the first time, I will never forget what I saw. I admit, I was terrified of what the future was going to hold for him and for our family. But, when I took a good look at his precious face, I knew we would be just fine. He was a perfect beauty.
Reid was born with a complete bilateral cleft lip and palate which were total surprises to us. From the moment of his birth we were thrown on a medical journey that has had many twists, turns, and bumps, but one that has proven to teach us more than we ever thought about love, faith, and perseverance. Reid was taken to the Cleveland Clinic NICU one day after birth because he was having so many feeding issues. That really put things in perspective for me. While at the Clinic, Reid’s roommates were all about 1.5 pounds and struggling for their lives. And there was Reid. Taking up his entire bassinet with not much room to spare, I learned that we were so very fortunate for the gift of Reid. He did really well there and was able to go home after a 5 day stay. We struggled with reflux issues, feeding issues, bottle issues, and the huge job of tracking down a team that we wanted to entrust our child to. After a few bumps at one hospital, and a surgery that was less than successful, we transferred our care of Reid to Rainbow Babies Hospital in Cleveland, and we have been absolutely thrilled with our care there. Under the care of Dr. Arun Gosain, Reid has been down many roads that have all been successful. He wore a NAM device to get his lip in alignment for 16 weeks. During that time, we would make the 1.5 hour drive each week to Rainbow for NAM adjustments. At 7.5 mos. of age, Reid was ready for his lip repair. After 7 hours in surgery, we were able to see the transformed face that we absolutely did not want to lose. We loved Reid’s wide smile and irristable grin, and in some ways, we feared giving that up. Seeing Reid with his new lip was an amazing experience. I tell everyone that I am the luckiest mom around because I got to fall in love with my son’s face not one time….but twice. And that is so true. I fell head over heels with Reid’s new lip. He was beautifulAfter surgery, Reid wore nasal stents for 3 months and we taped his lip area for that time period as well. He really healed well and quicker than I ever had imagined he would. Reid then had his palate repaired when he was 11 mos. old and did well through that 6 hour procedure as well. He was truly a trooper through it all. When he was 17 mos. old he had 3 top teeth extracted due to malformation which has not stopped Reid’s eating one bit. He does great! He is scheduled for a couple of scopes in November of 2010 to check on his nasality and see what may be in store for him surgically in the near future. He attends speech therapy weekly, and has come a long way. He is quite the talker! Our family has been absolutely blessed by so many other families that have cleft children. When Reid was first born, I was not sure where to go. We found several blogs of others who had been in our shoes which helped us tremendously. We also have a blog and invite you to it any time. Our hope is that we can light the way for another family who finds themselves in a similar journey sometime. We are grateful to so many for helping us in so many ways. It is our prayer that we, too, can give back to others. Reid is our little fighter……and he will always be our hero.
Thanks for allowing us to share our story…..
Janeen, Brian, Ellie, and Reid