How many times have you actually seen the words cerebral palsy? When somebody says they have a child with cerebral palsy do you cringe and does it make you feel sad? That is definitely the reaction I get when I tell people my son has cerebral palsy.
Have you seen the commercials advertising for attorneys to help file lawsuits against your doctor if "you or someone you know and love has cerebral palsy"? That's because a lot of cases of cerebral palsy are caused by a mechanical injury like Joseph's. Cerebral palsy results when there is some deprivation of blood and oxygen to the brain. Does that sound familiar? Remember the post about HIE-Hypoxic Ischemic Encephalopathy? Lack of blood and oxygen? Yeah, that one!
Joseph's cerebral palsy was caused by his HIE "event" during the birthing process. There are other causes of CP like fetal stroke, maternal infection, but I'll leave that to you read through at my favorite medical education site, the Mayo clinic.
Cerebral palsy affects no two people the same way. There are several different categories of cerebral palsy but I'm only going to discuss Joseph's type, severe spastic quadriplegia.
Joseph's core and trunk are hypotonic, meaning he has low tone. His muscles do not have the correct signals to contract and hold him up like you and I can. Whether you realize it or not, your muscles have to contract to help you sit up. The nerve signals from his brain to his spinal cord and muscles were messed up during his birth trauma and malfunction in their duties.
Joseph arms and legs have very high tone and are characterized as spastic. Just like the cause of the low tone, the high tone is caused by messed up signals to the nerves and muscles in his legs.
The severe spastic quadriplegia has significantly affected Joseph's ability to move. When he was younger and weighed less, he moved his legs more than he does today. In fact, he used a gait trainer and he would take steps. I even have a video of his awesomeness.
However, as Joseph has grown taller and gotten heavier, the muscle tone imbalances have caused contractures in his arms and his legs-despite wearing braces on them, stretching and range of motion exercises. Contractures are a shortening of the muscle and tendon due to the spasticity and his lack of voluntary movement.
Over the years we have tried Botox injections in the muscles in his legs and arms to help release some of the tone that causes those contractures, but the cost/benefit has not proven positive. The injections are painful, require Joseph to go under general anesthesia, and just don't provide substantial quality of life improvements worth the cost of putting him through all that misery.
One of Joseph's many medications he takes for his spasticity is called Baclofen. It serves as a muscle relaxant to help address some of the tightness. However, Baclofen does not pick and choose what muscles it acts on, so the medicine makes him severely constipated. The severe constipation causes a whole other set of issues and medications.
Joseph also wears braces on his feet and hands to help slow the progression of the contractures, but there is no magical solution right now that will stop them from progressing as he gets older. You can only stretch and wear braces for so long and then it just gets irritating.
One of the biggest problems cerebral palsy has caused for Joseph is scoliosis of his spine. Because of the low tone in his trunk and the imbalance in his muscle tone, his spine has been misaligned and compromised. The curvature is measured in degrees, and Joseph's is pretty severe. It is now to the point that it is compromising his lung capacity, basically squashing one of his lungs smaller because his spine is curved so severely.
There are children who undergo 10+ hour long surgeries to fuse their spine to resolve scoliosis. However, the risks associated with putting Joseph through such an aggressive and long surgery are too great. This falls into the category of quality of life vs quantity of life.
There's a 30% or greater chance that Joseph would not survive through the anesthesia required for the 10 hour long surgery, and the recovery can take upwards of over a year. His father and I are not willing to take our chances with his life with those odds, nor do we want to intentionally cause him more pain and discomfort that he already has now.
The cerebral palsy and low muscle tone also affect Joseph's ability to eat. He doesn't have the coordination to do the chew, swallow, breathe combination that I bet you never even noticed you have to do when you eat until you read that. When he was a baby out of the NICU, and up until 13 months old, feeding Joseph a bottle was an hourly struggle. The only reason he COULD take a bottle is because he was relying on the sucking reflex that babies have. I counted every single ounce of food he took in, and it drove me crazy. I also had to give him all his medications orally, which was extremely stressful and difficult. Joseph ended up with a feeding tube after he lost his sucking reflex, but that's another blog post. ;)
So that's Joseph's cerebral palsy in a nutshell. The lack of blood and oxygen caused brain damage, which caused the signals to nerves and muscles to malfunction, which caused the contractures, scoliosis, and his inability to eat. The progression of the cerebral palsy and its affect on Joseph's body will continue to manifest as he gets older and heavier, and we will continue to face the challenges as they are presented.
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