The Many Faces of Moebius Syndrome!

"Benjamin's Story" as told by his mom!

Just wanted to say hello and how happy I am to find this group. My son Benjamin, born Sept. 30th 2006 has Moebius. It's been a long road but so worth it. Benjamin is such a joy and blessing to our lives. He has also been diagnosed with another sydrome call VACTERL. When he was born (at home) he was hardly breathing and stayed blue. He was rushed to the hospital and then life flighted to another hospital. He wasborn with a TEF which is where his trachea was connected to his stomach instead of his esophagus. He had surgery to repair this at oneday of life. This is where the whole journey began. Benjamin was a healthy boy, but was born with alot of anamolies. Without his health, I don't think he would have survived everything including two surgeries and one infection in the first 4 weeks of life. He left the hospital after five weeks with a g-tube. He only used this g-tube for one month after coming home and now I really wish we would have fought putting it in. At that point in our minds it was the only way we would ever get him home. We started using the Haberman bottle at around 2 weeks old. He is now almost 2 1/2 and has come so far. He is walking, talking, running and doing summersaults. He is not able to completely close his mouth without assistance which he is learning to do on his own. It is so cute to watch him take his index finger and close his lips. This has prevented him from making the sounds B,P,M. He has therapy twice a week in our home seeing a occupational and speech therapist. He has strabismus, which he wears glasses to correct. He is able to move his eyes from side to side and up and down. This has improved greatly over the last year. He used to compensate by moving his head and still does this a little. He is not really able to blink. He does about an 1/16th to 1/8th of a blink, but most of the time rolls his eyes. When he sleeps his eyes usually stay open slightly. Up untill now we have had to deal with all his VACTERL issues. I'm not sure why I haven't found the moebius syndrome foundation and this group until now. Maybe we had to deal with everything else first. Ben has had four surgeries so far. Two of these include reconstructive surgeries on his hands. He was born with hypoplastic thumbs. This is common with VACTERL, but has anyone heard of this with Moebius? He had a pollicization surgery done six months ago where they removed his non-functional right thumb and turned his index finger into a thumb. Now he has a finger-thumb pinch. Before he used his index and middle finger to hold things. Last week he had reconstructive surgery on his left hand. His left thumb had minimal movement so they were able to transfer tendons. We are very excited to see the result of this surgery. His right hand has been so successful!!! Well, I'm sure there are many more things to write, but I need to go. Ben is my 5th of sixchildren and they all need me. So glad to find this group!!!

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