Cerebral Palsy
Cerebral Palsy Complete Placenta Abruption September 13th, 2007 my wife was at the hospital for an iron transfusion. Her iron was low, and that concerned our doctor. He kept her overnight and though the staff on hand jested about his over cautiousness, I thank God he did because if she were at home I fear they both would have been lost. It should be noted here Tristan had no prior conditions, he was 100% healthy, and actually the tech who did one of his last sonograms said he was one of the most beautiful looking babies she’d seen (medically speaking of course, plus he’s just handsome) no defects whatsoever. Tristan’s last sonogram revealed to the tech that his mom’s placenta looked “old”, though she couldn’t explain why that would be. I visited her at the hospital that night, and I had an overwhelming feeling I shouldn’t leave. I had to work the next day, so I did the smart thing and went home. I was awakened at around 5:00 in the morning, September 14th, 2007 to my wife’s mom telling me I needed to get to the hospital. Carefully, yet nervously I drove to the hospital. To my surprise, there was no one to talk to at the unit’s desk and when I walked into her room I saw a scene that seemed out of a horror film. There was blood everywhere, and the nurse on staff had told me that her placenta had abrupt. While she kept an eye on the monitor and talked to my wife, I watched the heart monitor slowly decrease, I asked the nurse how long he could stay like that, and she answered with “I don’t know”. Later we found out it was a complete separation and that during surgery our son had actually died. His Apgar score was 0, 0, and 4, Apgar score is a number system used to determine how well an infant is doing right after birth. Read About Apgar Scores here. So we were given little hope from the start. We were told by the doctor that there was no obvious medical reason why her body terminated the pregnancy, just that her body, for some reason, was done with the pregnancy. Our son was transported to another hospital that had better staff for pediatrics. He spent the next month fighting for his life. When he first arrived, he was given numerous medications; including, Phenobarbital (the highest dose a human being can handle, not just a child), dopamine, and a few others. He had a central line in his head, they then later transferred to his abdomen, his IV site infiltrated, causing his skin to scar on his hand, a feeding tube NG (Nasogastric) tube, respirator, a warming bed (he couldn’t regulate his temperature), and numerous tests including an ECG (electro cardio gram) to monitor his heart, EEG to monitor his brainwave activity(electroencephalogram), CT (Computed Tomography) to show the damage his brain suffered during the incident, and sweat tests to rule out Cystic Fibrosis. His cardiologist recommended a sonogram to get a better look at his heart. They found that he had an atrial septal defect (ASD), Tristan’s heart had a “hole” in it, which should normally close as an infant begins to grow, and is fairly common at birth. They wanted to keep a close watch on Tristan’s heart so they recommended a sonogram at his 3 month mark, and then another one a year later. The EEG showed abnormalities, that he would have possible seizures without medication. Thankfully, he’s only had two seizures since the day of his birth, one at birth and the other after his one year mark. He had problems in the beginning with his ability to “suck”; he couldn’t drink from a bottle so we were told he might have to have gastric (G) tube inserted into his abdomen for feeding. They informed us that in the hospital a feeding tube is sufficient, but not practical for parents at home. Again, I had felt that he was going to push through this, and the nurses on staff said to keep trying to feed him his bottle orally (as they did when were not present), until finally, for me, one day he did. It was a huge breakthrough, saving him a surgery and keeping our hopes alive, that he might be coming home soon. The Prognosis He was diagnosed with microcephaly (small brain), and an atrial septal defect at birth, and by the time he was 6 months old, was diagnosed with Cerebral Palsy. We had high hopes for him, as any parent would, and though seemingly discouraged by a grim prognosis, our son is quite the opposite. My wife was horrified, as was I, when told by a doctor that he probably wasn’t going to do much more than what he was then, eyes closed and relatively unresponsive to stimuli. He hadn’t opened his eyes for the first 2 weeks and I had to reassure my wife that he was pumped full of drugs, and that I don’t think anyone would be opening their eyes after all the trauma he went through and to then be full of medications, and be expected to respond? One of the side effects of Phenobarbital is sleepiness, and I felt that he would eventually pull through. Slowly but surely, he started healing. After a month’s worth of time in the hospital, our son came home. Healing Process In my opinion, Tristan had the best team of doctors this area could muster. His doctors consisted of a pediatrician, pulmonologist, cardiologist, neurologist, and countless staff of nurses to help in his healing. After his first time coming home with us, it was a struggle. We were so concerned with his well being we didn’t get much sleep. He was given a RX of Phenobarbital, to keep his seizures from occurring, and that could be difficult to give him at times because of his inability to drink large quantities of formula. We also learned he had a reflux problem, which apparently is normal with infants. It happens when the child’s esophagus is tight, and doesn’t close to keep the acid down, causing regurgitation. Not good, when you’re feeding your son his medicine, then later expels it. Tristan was given another RX for his reflux called axid. A couple of months later, he began to really grow and drink larger quantities of formula. This made us hopeful again, because though he was drinking formula, if he didn’t drink enough, he’d still have to have the NG tube inserted. As Tristan grew, he had muscle spasms that would keep him from being able to eat, or function for the most part. Not quite seizures, but rather locking of his muscles. So his neurologist prescribed clonazepam, a muscle relaxer and also works as an anti-seizure med. Note: Now that he’s two years old, he drinks and eats everything he can! He still has a hard time with his chewing (he tends to tongue thrust), but he wants and tries to eat everything he sees! We also switched his anti-seizure medication to Trileptal (less affect on young children, studies show Phenobarital can drop IQ points by up to 8, and we just didn’t want to risk it). Parenting a child with CP I know most people may not understand this statement, but for me it’s true. I really couldn’t imagine my son any other way, not to say if there were a cure and he wanted it I wouldn’t want him to utilize it, just that I love him just the way he is. In the aftermath of his injuries, my son was blessed with great doctors, and for that I’m grateful. It was the events before his injuries that caused all of my anger and frustration. On top of this, I was getting frustrated with the general public’s uneducated view of CP. I couldn’t carry my son (and still can’t) into a store without someone asking if he’s tired. Though I can understand where they might assume this. I found this frustrating because he wasn’t tired, he simply can not hold his head up for long periods of time. I now dismiss this as a lack of knowledge and I willingly and happily let the person(s) know that he has CP. Which is usually followed with, “I don’t know what that is” or “Aw”. The latter used to annoy me, now though it just shows they are trying to be sympathetic, uninformed as they may be. The aforementioned “I don’t know what that is” was followed by a brief explanation of my son’s condition, slightly increasing they’re knowledge on the subject. The most frustrating thing was, I didn’t think of my son as something that should be looked at as “sad”. This reminded me of the kind of sympathy you’d give to an animal, and could actually be taken offensively, (as I took it to be at the time) because it made me feel as if my son were less than average in their mind. In my mind I was thinking “he’s extremely intelligent, full of life, and has a glowing personality”, so his physical body doesn’t do exactly what he wants it to do, who’s body does? Have you ever wanted to do something, and you couldn’t achieve it? Does this make you less of a person? Should you be showered in sorrow simply because you can not do this one thing, or multiple things? Say you wanted to be a basketball player like Michael Jordan and fly through the air with ease, but no matter how hard you tried, no matter how much practice you put in, you just couldn’t play well, let alone jump like Mike. Does this mean you should be looked on with sympathy? Or should you be revered for the things you are capable of? These were the sort of frustrations I had to look past in order not to drive myself crazy. Someone I know, with a special needs relative, actually asked me this just today. “Doesn’t that drive you crazy when people stare?” In all truth, it doesn’t actually bother me now, staring never really bothered me before, just certain remarks. I know it’s hard not to stare at my son, he’s handsome! Of course I know she meant staring in a rude way. The kind of staring you’d do if you saw Ronald McDonald eating at Burger King. Staring at someone because they’re “different” is an interesting concept. I mean we’re all different in our own right, right? So why stare at someone in a wheelchair, or with a prosthetic limb, etc? What we consider to be the “norm” is seemingly face value. If you can see the difference, it must be ok to take a long gaze at it? The polite thing to do when looking at someone for a prolonged period of time is to at least introduce yourself. So next time you catch yourself in a staring contest with a person, say “hi”, you might be surprised at the results. -Ray
The easiest way to define cerebral palsy is- it is the mis-firing of neurons in the brain affecting the muscles normal function in the body, and is a condition that does not worsen. The toll on the body over time (e.g. aging) is amplified so surgeries may be necessary to help with mobility, etc., but the condition -the CP itself- does not worsen over time. I don't think of cerebral palsy as a disease because, cerebral palsy is the effect of, usually - not always, brain damage at birth. Obviously this has vast possibilities and thus the reason for so many different forms or types of cerebral palsy. Specifically with Tristan he still has abnormalities shown by his EEG in the frontal areas of his brain, they've been this way since his first EEG, so we don't necessarily expect this to change. Plasticity- as the doctors called it when Tristan was a newborn- is where babies have the uncanny ability to bounce back from seemingly impossible situations. So it is indeed possible that his brain could almost 'heal' itself, but we're not and haven't held our breath about that.
The Story of Tristan
I am 26 years old [at the time of this article], and I’m the father of a child with cerebral palsy. His name is Tristan, and he’s vibrant and full of life; unlike his prognosis by some of the doctors his day of birth.
So far it’s been challenging and rewarding to have Tristan in our lives. The only hard thing for us sometimes, is that he’s like any other toddler, he wants to get everything he sees and he gets frustrated when he can’t do some of the things he wants to. He absolutely loves music, he likes to play piano, guitar, drums, anything that creates a sound (musically) he loves. Wonder where he gets that from?
Former Frustrations
I want to start by saying I’ve [Ray] come a long way with anger issues of mine. I’ve learned to forgive those I never thought I could, and it’s definitely made a huge positive impact in my life. Some of that frustration and anger came from my son’s condition. I don’t want to be misunderstood, I don’t blame my son. I was upset that my son’s condition was brought on by a hospital’s lack to react in time. The fact that he was perfectly healthy before birth, and suffered a tremendous amount of injury, for what seems like nothing more than a failed attempt at practicing good medicine, really irritated me.