This page is to introduce you to my daughter Melissa,
she is 18 years old and a junior at our local High School.
She likes music, videos and she loves little children
especially babies. She dreams of the day she will become
a mother. This all sounds pretty normal I guess but
the part of her life that we want people to know about and
possibly help with is she has also had 40 shunt revisions
for a condition she has called hydrocephalus
She also has cerebral palsy, a seizure disorder,
and is developmentally delayed. Melissa has not been one
of the lucky ones that normal medical treatment works for,
no one understands exactly why (and we have been to many
doctors, some of the best in the east).
Melissa's joumey started at birth when she was born 8 weeks too soon, she developed spinal meningitis at birth and because of the meningitis and respiratory distress she was suffering she developed seizures at 3 days old. Her first 6 weeks of life were spend in the neonatal intensive care unit as we all waited and prayed she would continue to survive another day. In those first weeks we had no idea what we were up against and all we wanted was to be able to have our beautiful daughter live. We would deal with whatever else we had to as time went on. She was able to leave the hospital when she was six weeks old but we only had her home for three days before we found out she would be going back four days later to have a shunt placed to treat the hydrocephalus that had began before she was even discarded from the hospital.
During the next five years Melissa spend more time in the hospital than at home and her shunt needed to be revised every few months, no matter what the Doctors did nothing seemed to work until just before she was five they decided to do a craniotomy. That worked for almost a year and a half and then we started all over again, with revisions every few months with her getting sicker and sicker each time. About the time she was nine we started needing two revisions to stabilize her each time so they decided to do another craniotomy on the other side, but this time the results were not so favorable and she needed another revision before she even left the hospital. Well the problems continued and so did the revisions and because of all the revisions we were then told she now had a new complication called slit ventricle syndrome. So now sometimes her shunt fails because too much CSF builds up and sometimes because the shunt drains off too much CSF . As far as we know we have tried every type of shunt made and every type and size of shunt valves, we have also tried them with and without anti siphon devices. But still the operations continued, and all we ever hoped for was longer periods of time between surgery. She just came home from the hospital again a few days ago after having her 39th and 40th shunt revisions only seven days apart. As you can see from this story the problem still continues and that is where we need your help. We are looking for anyone out there who may have a similar situation or know of some one that has had this many revisions, and by comparing information we hope to be able to find a way to help our daughter.
Melissa is an inspiration to us and to everyone that knows her, her faith and courage are unshakable, Please help us to help her. Please E-Mail us if you have any information that may help and please let us know if any of our experiences can be of any help to any one else.