My son Benjamin, born Sept. 30th 2006, was diagnosed with Moebius at around two weeks of age. It has 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 syndrome call VACTERL.
Benjamin was born at home and we soon realized that he wasn’t breathing well so he was rushed to the hospital and then life flighted to larger hospital. He was born with a TEF which is where his trachea was connected to his stomach instead of his esophagus. He had surgery to repair this at one day of life.
This is where the whole journey began. Benjamin was a healthy boy, but was born with many birth anomalies. 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 almost six weeks with a g-tube. He only used this g-tube for one month after coming home thanks to the Haberman bottle.
He is now 7 and has come so far. He is walking, talking, running and can even ride a bike without training wheels. Since he is unable to close his lips all the way, some things are still difficult for him such as making the sounds B,P,M. He has amazingly learned how to drink out of a straw, blow his birthday candles out, and even play a penny whistle. I am in awe when I see him do things.
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 few years. He used to compensate by moving his head. He is not really able to blink. He does about an 1/16th to 1/8th of a blink, but rolls his eyes back in strong light such as the sun. When he sleeps his eyes usually stay open slightly.
For the first two years we mostly had to deal with all his VACTERL issues. Now we have moved on and his medical issues have slowed down. Ben has had six surgeries so far. Two of these include reconstructive surgeries on his hands. He was born with hypoplastic thumbs. This is common with VACTERL. He had a pollicization surgery done at 22 months old. This surgery is 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. Six months later he had reconstructive surgery on his left hand. His left thumb had minimal movement so they were able to transfer tendons. We are very pleased with the results of both of these surgeries. Benjamin is an amazing miracle to us and such a blessing from God! God must have great plans for him!