Moebius Syndrome Awareness Day

Bradley

Georgia

I will never forget the morning that Bradley was born. I was at my sister-in-law's house having Christmas dinner with family on Christmas night when I went into labor. The excitement that night as everyone was timing my contractions and debating whether or not I should go to the hospital was indescribable. Bradley came into our lives on the morning of December 26th, 1998. He was our first child and we were so glad to be starting our family. The doctors discovered during my pregnancy that Bradley had a blockage in his left kidney, but that was all the doctors discovered at that time. I was extremely sick the entire time I was pregnant. I would have fainting spells and was very week and was losing weight instead of gaining it. I was extremely worried that was something was wrong with the baby I was carrying inside of me. The doctors assured me all that was wrong was the blockage and it could go away on it's own as Bradley grows or it could be corrected with surgery. When Bradley was born we noticed that he wasn't blinking, or moving his eyes. He just stared blankly at the ceiling. The doctor told us that he had temporary facial paralysis that they believed was caused due to pressure in the birth canal. Bradley was unable so suck from a bottle due to the paralysis. They thought it would only last a day or two. The hospital sent us home two days after he was born and he was only able to get down tiny amounts of formula with us coaxing his mouth around the nipple on the bottle. We decided to take him back to the hospital the day after we came home with him cause we knew he wasn't getting enough nutrition. The doctors then put in a n-g tube. Which is tube that is inserted through the nostril and runs into his stomach and that was how he was going to be fed. We took him to the doctor a few days after returning home for the second time because he was steady losing weight. The pediatrician told us that he didn't have any idea what was wrong with our son but he would do anything in his power to find out what the cause was. He sent us to the Egleston Children's hospital in Atlanta. The doctors there didn't give him much hope as he continued to lose weight. They performed what seemed like hundreds of different tests on him. They kept him in the hospital for several weeks. He finally got to go home when he had started to show some weight gain. He came home did really well on the tube feedings. But eventually he started losing weight again so once again we were sent to the hospital in Atlanta. This time they put together a whole team of doctors to help determine what was the cause of Bradley's paralysis. They still could not come up with an answer to that question. They told us they wanted to take out the ng-tube and give him a g-tube instead, which is tube inserted directly into the stomach. They told us they didn't think he would ever be able to eat on his own. I told the doctors absolutely not. I knew with all my being that my child would one day be able to eat on his own. I just had a gut feeling so I refused the surgery. So again we went home with no answers. We started noticing that he was reaching any milestones after a few months. He wasn't holding his head up at all, he wasn't starting to coo and babble. And he still wasn't focusing his eyes on anything. We also started noticing that he wasn't responding to sound. After several more trips to the hospital and doctors visits in Atlanta we learned that our son had profound hearing loss in both ears. He was given hearing aides but he hated them and refused to wear them. They didn't help him that much so we didn't really push the issue and we stated teaching him sign language. He took to it like a pro. He is one smart little boy.One day I was home alone with Bradley when he was 8 months old and I laid him on the bed to take a nap. I didn't think much of it as he had not yet started to roll over, sit up, or even hold his head up that great. I kept checking on him often. After a few minuted I heard a thud and then he let out an awful cry. I rushed into the room to find that he had somehow fell off the bed. I picked him up and looked him up and down for any injuries. Luckily I didn't find any and he calmed down pretty quickly. He was still crying a little bit so I decided to try and go through the routine of feeding his. We always tried to get him to take the bottle before we connected the feeding tube. On this day however...to my amazement he drank the whole 8 ounces from the bottle as if he had been doing it all his life. A few weeks before he fell of the bed a friend of mine that was from Israel, told me she was going to be traveling home to Israel for a visit with family. She asked my mom and I if we would like to write a prayer for her to put in the Wailing Wall while she was, of course we said yes. I have always had a strong belief in God, and knew everything was in his hands. Everything happens for a reason. I later found out that the very day Bradley fell of the bed and drank from a bottle all 8 ounces, was the day my friend was placing the prayers in the wall. It brings chill bumps to my arms this day thinking about it. I called the doctor on that day and told him about Bradley drinking the full bottle. He told me to continue giving him the bottle first before hooking up the tube. So I did this every time I fed him. After a few days of him drinking every bottle on his own we said goodbye to the ng-tube. After a few more months the eye doctor started trying to correct his eye problems. It started with botox injections to close one eye at a time because he had developed ulcers on his corneas due to his lack to produce any type of tears or moisture. The doctor eventually implanted him with springs in his eyelids when he was two to make his eyes stay shut and he had to work to open them. Bradley was still not reaching milestones. He was still not able to hold his head up that well. He had learned to crawl with his head down scooting it across the floor. He had not yet learned to walk and eventually had to use a walker. When Bradley was 18 months old his team of doctors concluded that the most probable diagnosis was Moebius Syndrome. The springs in his eyes were eventually taken out and he was able to blink on his own and started developing a few tears. The blockage in his kidney went away on it's own as Bradley grew. Bradley continued to make great progress with everything, physical therapy, occupational therapy and sign language. Last year on January 3rd, 2008 Bradley received a cochlear implant to help him regain hearing in his right ear. This was an outpatient surgery and the moment Bradley got home from the hospital he took off walking on his own and he hasn't stopped since. He no longer uses the walker at all. He is in audio verbal therapy to help him learn to understand what he is hearing and he is making great progress with his speech. He is already saying a few words. Bradley lost his father last year in May. His dad (my ex-husband) was killed in the war in Afghanistan. With little communication skills we are unable to fully explain to Bradley where his father is and what happened.I know that one day I will be able to sit down and explain to him that his father is a hero. Thanks to technology and the cochlear implant this will be possible. I know that he will eventually talk one day. His therapist truly believes this too. He wants to talk! Bradley just turned 10 years old the day after Christmas. He is a very healthy, happy and loving little boy. He amazes us everyday with his determination. Bradley is an inspiration to us all!