Our Journey to a Cerebral Palsy Diagnosis

 

As a parent I felt as though there was something not quite right when at four months our son, Austin, who is now 4, was not sitting up like his brother had at nearly the same age. Our Doctor, during one off Austin's well baby check-ups, ask all of the typical questions. I answered with all of the typical answers. One visit in particular, I recall the Doctor rushed down his list of questions and I had Austin on my lap and he bragged about his head control and how well he was sitting up-this at 6 months of age and still not sitting independently. It might help to know a little history about us. My pregnancy except for a belligerent gall bladder and diet controlled high blood sugar was uneventful. Austin was born around 40 weeks after almost 36 hours of labor by a VBAC (vaginal birth after cesarean section) delivery. He had a very low platelet count which was monitored closely for the first 7 weeks of his life. Because of this the decision was made to treat Austin with antibiotics for a group B strep infection. This kept him hospitalized for an extra day after delivery. The low platelets were such a concern at 7 weeks of age he was sent to Children's Hospital in Knoxville, TN for testing to see what was causing the platelet count to be so low. After 1 week in the hospital and numerous tests no cause was ever found for the low platelets, which were now testing within the normal range we took home our beautiful and healthy baby boy. Still I worried. I locked it away in the back of my mind, something is wrong. Austin was always a "strong" baby. We had never seen a newborn like him. My mother called it!! We just didn't know it at the time. The first time she held Austin and every time she held him she talked about how stiff he was. We asked the doctor and his reply "oh, it's nothing to worry about". When Austin started showing developmental delays he said, "all babies develop differently , not every child sits at 6 months". Still in the back of my mind I worried. The doctor kept saying, "let's just wait and see" until Austin was 9 months old and we happened to see another doctor in passing and ask his opinion. He told us if he were to see Austin in his office that he would send him for a developmental evaluation and a genetic evaluation. needless to say we made the appointment and was in his office the next week. Austin, now 10 months old and still not sitting up sees the new doctor. His opinion was we would have to do some exercises with Austin to help him get caught up. We made the follow up appointments that he recommended and within the next couple of months I thought that our world would fall apart. The first doctor we saw was at the University of Tennessee with a genetic/developmental specialist. We did all the paper work and then the doctor came in and evaluated Austin for about 15 minutes and left the room. A few minutes later she returned and handed me a book and told me that Austin has Cerebral Palsy. I was completely in shock!!!! This news just really overwhelmed me!!! Then she said, "well you knew that or you wouldn't be here, right??" No!!! I had no idea!! She said that he had spastic Cerebral Palsy and that mentally he was unaffected. She also told us that she couldn't even guess at Austin's outcome. At this point I just wanted to die!! I felt as though she had just ripped out my heart and handed it to me. I had no idea what Cerebral Palsy meant, but to find out it could mean so many different things, that it covers from the slightly affected to the severely affected gave me hope. Of course, my baby could only be mildly affected. I couldn't let myself think otherwise. After crying for a couple of days I got it together and started making all the appointments that the doctor had recommended. The next doctor we saw was a neurologist. He agreed with the first diagnosis and even though we had a normal CAT scan already he ordered a MRI. While we were waiting for the MRI, I decided to get another opinion from the University of Kentucky genetics/developmental specialist. We spent nearly 3 hours there talking with doctors who confirmed Austin has spastic Cerebral Palsy. From the newborn pictures we took with us he told us that he could tell that Austin's problems started during the first trimester of my pregnancy and that no cause could be determined. He recommended following through with the MRI and the neurologist. We did have the MRI which was normal and then we saw another neurologist in Lexington who confirmed that the problem came to be during the first trimester. This was the doctor that told us that Austin would never have to worry about having seizures. This was a relief to me!!! He also told us he couldn't tell us how much Austin would be able to accomplish but that the first 3 years of life were critical to a child's development. At this time Austin was getting physical and occupational therapy once a week through the First Steps Early Intervention program on an outpatient basis. We were waiting for an opening in the Early Intervention Unit so Austin could interact with other kids while having his therapies. The neurologist recommended adding speech therapy along with the PT and OT. Just as Austin turned 13 months old he started in the EI unit 4 days a week. At fourteen months Austin was running the computer in the Unit by using a switch. When Austin was about twenty months old, we heard about a doctor in Louisville from Austin's Physical Therapist . She thought that he could help Austin and relieve some of his tone (stiffness). We thought by some of the medications that are out. We went to see him and he told us that he felt that Austin was a perfect candidate for a Rhizotomy (surgery in which the abnormal nerves in the spine are clipped). Again, I felt myself become overwhelmed. I couldn't imagine such a major operation on a baby not even 2 years old. The doctor, a neurosurgeon, explained everything to us and told us that he felt sure it would help Austin. After much thought and consideration we scheduled the surgery for June 4, 1997, a day that I will never forget. The surgery went great!!! Austin's Physical therapists were allowed to observe in the operating room during the operation. To me this was a great comfort, to be able to send him into his surgery with 2 of his friends at his side. Within a week he was outside swinging in his swing. The surgery was almost like having a new baby-- for the first time in his life, Austin was relaxed when we held him. Before surgery we compared him to a little board--now his legs are so relaxed and limber!!! Now we are working on strengthening those muscles in his legs and trunk and working toward mobility. Now at 5 years old Austin has been officially diagnosed as having spastic quadriplegia Cerebral Palsy. He is a beautiful, healthy, and happy kindergartner with many girlfriends. He is in a regular kindergarten class and receives PT and OT (Cranio Sacral therapy) 2 times per week, speech 4 times per week. During the warm part of the year he also gets hippo therapy. Computer training with an Assistive Technology consultant 1 hour per week is also worked into his weekly schedule with the consultant visiting the classroom from time to time to help them integrate his assistive technology devices into the classroom and all areas of school. Austin is a computer whiz. He is doing great!!! I admire his determination and spirit. He is truly an Angel!!!  Why had the doctor that delivered Austin and saw him for every well baby check-up not picked up on his Cerebral Palsy?? After having the obvious warning signs pointed out, how could he have missed them?? Why didn't I insist that something was wrong?? I had felt it!!! My head said to go along with the doctor. I know now that I was in denial, my heart had always known, I just didn't want to believe that my beautiful baby boy was going to have such problems to over come. I just want to reinforce that parental intuition that you might have. If you believe for one second that there is a problem then there probably is. And just because you baby's doctor wants to just wait and see---Well, you don't have to do that either!!! We've all read how critical the first 3 years are to a child's development are. I will always wonder what difference it would have made if Austin had gotten to start his therapy sooner--We lost valuable time just waiting to see!!!! Email Austin's Mom