Spina Bifida and Hydrocephalus
My Son Eddie was born 6 weeks premature with Spina Bifida and Hydrocephalus. At birth he weighted 6lb 14oz and was 20" long. His head was 42cm at birth and they did not think he had anything but a brain stem. They thought that Eddie would not be anything but a veggie for his life but Eddie has surprised us all. He is wheelchair bound but is the sweetest most loving child I have ever seen. He has been in the Hospital many, many times over the years with quite a few different problems. He has had to have about 30 different surgeries on his shunt which regulates the fluid pressure in his brain. He has had to have 3 back surgeries to release his spinal cord from scar tissue in his back. That condition is called Tethered Cord and is something that impacts him in so many ways. Eddie has had to have double hernia surgery, muscle elongation surgery in his eyes and also in both of his feet. He has had several broken bones from low bone density. He has chronic urinary infections which plague us most of the time. It is a constant battle and it causes him to be very sick most of the time. Eddie spent 3 months in the Hospital a while back and almost died on us but thanks to the hard work and determination of our medical team he made it through it. He has been bed bound since then but we hope that is only temporary. We have to cath Eddie every three hours because his bladder does not empty on its own but we do what we have to do when we have to do it. I know in my heart that Eddie is an angel gifted to me by God. I make sure to thank him every day for that gift. Because of the Hydrocephalus and his prematurity he has quite a few developmental delays and is below age in his maturity level. He still loves his cartoons and is obsessed with Power Rangers and Spiderman and the X Men. He is the joy of my life! Oh my lord where do I start? I know without a doubt that if it were not for Children’s Hospital my child would not be here. He is who he is because of the hard work and determination of the Doctors and Nursing staff at Children’s. Eddie's Doctor (Dr. Jeff Blount) is my Hero! He never gives up and he works so hard to make sure our kids are getting all that they need. This man not only works on these kids in the Hospital but I know that he takes them home with him. Also, he does not stop thinking about them when he leaves the Hospital. He really cares and listens to the parents and works with the parents for the betterment of the kids. I don't know where we would be or what we would do with him and without the rest of the staff up there. So many have become parts of our family and we keep in touch with quite a few even after we leave. Not only is there the care and support of the staff but while you are there you also have the love and support of other parents that are there with their children. You create bonds that follow you throughout your days. It feels so good to me to know that the Hospital is only 100 miles away and I know if we have to we can get there pretty quick. I will never move any farther away than I am because of Children’s. I don't want my child to be anywhere else for his critical healthcare needs. I am also so thankful that the Doctors and Nurses up there work so well with the Doctors down here. God made a special place on this earth for his angels and that place for me is Children’s Hospital! Our Hospital is the best in the world without a doubt!
