I am often asked, “What is sacral agenesis?” Sacral agenesis is a birth defect where an individual is missing the bottom five (5) of their vertebrae. These are the vertebrae that give your butt their curvature. Zachary is missing the bottom five (5) of his vertebrae and the nerve endings that correspond with those vertebrae. We learned that Zachary’s spinal cord is not entwined and that he simply lacks those nerve endings. Those nerve correspond with his bladder, as well as his calf muscles.
What does that mean? Simply put, that means that Zachary will never be able to feel when he has to go to the bathroom. His calf muscles will never develop like our calf muscles, which has resulted in trouble walking.
When Zachary was a baby, he was born with his feet touching his shins. Scott and I performed many exercises to help get his feet down and more relaxed because the muscles were so tight. One surgery Zachary had was to release some of the muscles in his feet so that they would lay more normal. As a baby, he was delayed in his ability to walk. However, Zachary was determined to make it happen and pulled himself up and learned to walk. We have been told that in the condition of his feet, this was a complete miracle.
At three (3) years of age, we started growing tired of failing horribly at potty training. We took Zachary to see a urologist. After reviewing Zachary’s x-rays, he immediately knew that Zachary had sacral agenesis.
When Zachary was in the first grade, he had extensive surgery to reset his feet. He had been walking on the outside of his foot which was resulting in damage to the nerves in his ankles. Our doctor, Dr. Kathryn Doughty, informed us that she needed to perform the surgery in the very near future or we would have to amputate Zachary’s lower limbs.
Last summer, Zachary had a major surgery where his urologist at Shriner’s Hospital, Dr. Andrew Freedman, gave Zachary a mitrofanoff channel and ace. I’ll describe more about these in another blog.
Our goal as Zachary’s parents is to help him maintain a “normal” life. We want Zachary to be as self-sufficient as he can. At 8 years old, he was catheterizing himself. Even now, after he had a surgery to fix some of the complications with the mitrofanoff, Zachary is catheterizing himself and wants to be in control of his medical care.
You may ask yourself, “Where is the miracle here?” My answer . . . EVERYWHERE. Doctors have been such a blessing and miracle to help save Zachary’s feet, the miracle that he was even able to walk as a baby, the miracle that Zachary is catheterizing himself at 8 years old. The major miracle . . . when I googled sacral agenesis I saw others who suffered from this horrible defect who didn’t have their lower limbs and were able to be mobile using a skateboard. We were lucky. While Zachary may have to use a wheelchair for long distances or hang on his dad and I because he gets tired, he still has his legs, he can still walk with the assistance of leg braces, and he is still happy and amazing.
Zachary is our miracle.