As a lot of folks have asked, I thought I would post about Anna's shunt. Yes, she will have to have it for the rest of her life. Of course, there is always the possibility that some type of medical advancement will replace the shunt but she will always have to have some help with fluid drainage.
Anna has the most severe form of spina bifida. Luckily, the opening occurred on the lowest portion of her spine and not higher which is why we believe she will be able to walk.
Almost all babies born with this type of spina bifida have to be shunted. It was explained to us that because her spinal cord is not normal, the fluid in her brain does not drain properly. The shunt is on the side of her head. A small tube, under her skin, runs behind her ear down across her chest and stomach to drain the fluid into her abdominal cavity. Anna had surgery to have the shunt put in place when she was less than a week old. About a week later, she had to have surgery again after it was determined that the fluid was not draining properly.
With Anna's first shunt surgery, extra tubing was rolled up in her abdominal cavity to take into account her growth. As she grows, the tube unrolls. Even if she never has any problems with her shunt, she will have to undergo surgeries as she grows to have the length of the tube corrected.
Anna's shunt scares me. We were told by the neurosurgeon that shunts are rudimentary and easily prone to malfunction or infection. We have memorized the warning signs. I will breathe a little easier when she is older and able to tell me if she has a headache. For now, we take it one day at a time.