Since we've been diagnosed (officially) with Cerebral Palsy (CP), a lot of people have asked me what that means exactly. So, I thought (since I'm a teacher at heart) that I'd give a little seminar-post about CP to hopefully answer some of the bigger, more common questions.
CP is a condition that effects the brain and nervous system and can cause many different symptoms ranging from extremely mild to extremely severe. There are different kinds of CP: spastic, dyskinetic, ataxic, hypotonic, and mixed. We believe Sadie is spastic. This means that her muscles are very tight (although this isn't a constant thing with her, she is loose when at rest), her joints do not open up all the way (mainly her hips), and she tends to tuck her arms in, point her toes, and squeeze her legs together. However, she also shows signs of other types of CP, for example she tends to have abnormal movements and tremors, particularly during times of stress.
The majority of children with CP are born with it (even though it may not be detected until months later), but the good news is that it never gets worse. CP doesn't always cause severe disabilities, I'm sure most of you have seen a severe case of a person who is in a wheelchair, can't communicate or manage their bowels, and may not be able to eat, however, we believe (based on what we already see) that Sadie will never be this severe. And with lots of prayer and therapy, we also believe that Sadie will grow up to live a near normal adult life. Studies show that the sooner CP is detected and treated, the better chance the child has of overcoming and adapting to disabilities. Unfortunately there is no cure for CP, only treatment.
Many individuals with CP have normal or above average intelligence (our little genius), but may have trouble expressing their intelligence because of lack of muscle coordination in the face or other parts of the body. It is common for children with CP to make great strides in ability through therapies. We have already seen Sadie come a long ways. She can breastfeed, her seizures have subsided, she has even eaten solid foods somewhat successfully. She can roll over (although she doesn't do it often), bat at her toys, and almost sit unassisted. To you these may not be a big deal because your infant does them early and automatically, but to us these are HUGE gains.
What caused this to happen to Sadie? Well, there are a couple of different theories, but nothing is really known for sure. First we thought she aspirated the meconium and suffered damage due to lack of oxygen (Hypoxic Ischemic Encephalopathy, or HIE). Then it was discovered that Sadie's placenta and umbilical cord was infected with Group B Strep, so we conjectured that she was sick before she was born, which caused her to pass the meconium and aspirate it. But then we were told she never really aspirated the meconium, and even though the infection was in there with her, she was never infected. Now the thought is that the toxins from the infection actually crossed the blood-brain barrier and caused some damage. They think there was also some HIE, because she has shown improvement since her brain cooling, but the brain cooling wouldn't have helped the damage from the Group B Strep, so that is why she's not doing as well as most HIE/brain-cooled kids. And that is the conclusion we have come to for now.
Sadie's visual impairment is also related to her CP. Many people with CP have what's called strabissmus, or a lazy eye. Sadie does have this, but she also has Cortical Visual Impairment (CVI), which is lack of development in the occipital lobe of her brain, where her vision is interpreted. As with CP, this will not get worse. In fact, we've been told her vision will continue to improve, making the most gains before she is 2 years old. As her brain is stimulated through therapies, treatments, and exercises, her brain will grow, and hopefully so will her vision.
All of this to say we don't know what Sadie will be able to do and not do. Being so young and not really having a lot expected of her yet makes it hard to tell. She seems to be doing extremely well, but we tend to see the situation with rose-colored glasses...and having no previous experience with a child with CP, I'm not sure our judgment is accurate. Yes, she's delayed, but there is A LOT she seems to be able to do, and she doesn't seem that far behind (yet). We just keep working at it, doing our best with her, giving her the best care and therapy and treatment, and we hope that it all helps.
If you want to read some more about CP, here are some good websites to check out.
United Cerebral Palsy
National Institute of Neurological Disorders