I Know My Kid Better Than You
When well-meaning medical professionals do more harm than is already there. Our journey to my son’s Cerebral Palsy diagnosis.
My son was a miracle. The doctors couldn’t tell me why he survived the horrific birth that he had. He was dead when they delivered him from a severe birth complication called Vasa Previa. His cord that was formed improperly broke in half during delivery and caused him to lose 90% of his blood volume. After 5 minutes of CPR and blood transfusions he was able to hold his own heartbeat. They told us the first 24 hours would be crucial and they couldn’t make any promises.
During those 24 hours he did great. The following 11 days in the NICU defied all expectations and he had no further complications. There was more talk about God from men and women of science and medicine than I had ever experienced. I think we left the NICU with several of them converted to Jesus if they weren’t already. And we weren’t trying to talk to people about God, we were just a living testimony of the power of faith.
During the stay, many nurses started the “He is going to be fine” speeches. “He is doing so good” we heard as we stared at our child on a cooling machine that drops his core temperature for 3 days to avoid further damage to his brain due to the blood loss. Deep down, as parents, as a mother I knew he wasn’t fine. But, in their defense, he wasn’t crashing and needing constant resuscitation like the 1 pound baby next door to his NICU room. At 8 lbs 4 oz, my son was a monster baby compared to the others in NICU. This made him appear healthier. I will forever thank God for the most experienced Neonatologist working my son’s case. He was the one that continuously warned us that though our son was okay right now, he may not always be. He could not pinpoint exactly what problems could arise, but like my own gut told me, he could also foresee a problem. After an MRI showed mild brain damage, that confirmation was there in my mind and this neonatologist. I asked if Cerebral Palsy was a possibility and he said there was no way to know right now. However, we still had another neonatologist and several nurses telling us as we left the NICU that brain damage can “fix itself sometimes” and “he is going to be fine.”
We set up services with a pediatrician just like you do with any child. He also went the “he is fine” route. He was choking on his milk and really struggling to keep liquids down. He diagnosed him with reflux and had us give him medication for it and thicken his milk with oatmeal. At the urgency of a cousin, we switched to her practice and started seeing her for pediatric care as she was a nurse practitioner and trained under our favorite neonatologist in the very NICU that our son was. She did an analysis of the MRI results and decided too that he was going to be fine.
Fast forward to about 6 months of age and he started crawling. He did it a little strange. I immediately started googling because it’s how I cope with the unknown of my child’s condition. My options were normal, autism, or cerebral palsy. I knew it was CP presenting itself. He also had these jerking motions when he would eat and at random times. We drove 4 hours to a pediatric neurologist and he showed no seizure activity and the neurologist said the likelihood of Cerebral Palsy was low and his shaking movements would go away in a month or two. After this we moved across the country for better medical care and for my husband’s new job. We started setting up appointments with a new medical team for our son.
Whenever he was born, his brain damage was classified as Hypoxic Ischemic Encephalopathy or HIE. We found a neurologist that had conducted a study on HIE babies and the following effect. We scheduled an appointment with him. He disagreed with the previous neurologist’s assessment of CP being unlikely and literally chuckled when I told him that he said the shaking would go away in a couple of months. At this point it had been 4 months at it was still happening. Our new neurologist set us up with a rehabilitation specialist and the NICU developmental clinic at one of the top children’s hospitals in the country.
We met with his new pediatrician which was very highly rated and seemed well received in the medical community. During her first appointment with him she said quickly “Oh no, he doesn’t have cerebral palsy, these movements are probably just stereotypies that will go away and his crawling his right on time and perfectly normal.” In her defense, I realize that she has parents that call her in the middle of the night over a hang nail. But this was not a hang nail. She recommended we contact the state funded early intervention program because of his birth history. She also stated that we didn’t have to worry about thickening his liquids anymore when he turns a year old since reflux resolves itself around 12 months of age.
We met with the rehabilitation specialist and discovered that she is one of the foremost physicians in the field of Cerebral Palsy, the former president of the American Academy of Cerebral Palsy, and a Goldstein award winner from the United Cerebral Palsy Foundation. So basically, she’s the CP Rock Star doctor. She quickly diagnoses him with Hypertonia and wanted to monitor him closely as he developed to watch for the formation of CP. She ordered Physical Therapy to start at 10 months of age.
He started walking at 13 months old. Developmentally he was doing great, everything on time. But just like with crawling, his walk was a little strange. He had a slight limp and his toes started turning in. At an appointment with the neurologist he said that he had Cerebral Palsy but he didn’t want to put it on paper until he was 2 just to be sure. Whenever Early Intervention came to my home with 2 social workers, a developmental screener, and physical therapist, and occupational therapist, and a speech therapist I had the worst experience I’ve had so far. The physical therapist said that she completely disagreed with the neurologist’s concerns about cerebral palsy. She disagreed with his physical therapist’s choice to put small braces on his feet for support. His regular PT had been working with him for months at this point and had made great progress with him. Each one of them said he was fine, he did not have any problems and our case was denied. (His diagnosis of HIE on paper alone should have qualified him).
I’m going to stop here and insert my rant. Most of the people who have told me “He is fine” at this point were the least experienced people in terms of neonatology, neurology, and Cerebral Palsy. No nurse should ever downplay an experienced doctor’s assessment of a patient. Nor should a pediatrician give a parent false hope that their child is fine when a world-class neurologist or experienced neonatologist disagrees. Pediatricians should not disagree with a specialist in their own field. NO and I mean NO physical therapist, occupational therapist, or speech therapist should EVER disagree with a doctor’s assessment of a patient. I have relied heavily on my instincts and I shudder at the thought of what could have happened if I just wouldn’t have. What if I would have stopped when the first pediatrician said he was fine. I wouldn’t have worried about finding him a neurologist who was an expert on his type of brain damage. That wouldn’t have led me to the doctor that prescribed his first bout of physical therapy. That physical therapy helped keep his hips aligned and helped him gain the strength to walk.
My son started experiencing pain regularly around the time Early Intervention denied us. We got the braces and I hoped that they would help with the pain. They did slightly but not completely. He was waking up at night with what seemed every muscle in his body flexed and I could lift him and he be as stiff as a board. His legs were very tight. His whole body would grow rigid. He screamed so much. I cried so much because I didn’t know what to do. His hands were being held in the strangest positions. I called the pediatrician and she said to give him Tylenol. (Like I wasn’t already giving him the highest dose allowed or something). I was horribly depressed during this time because I was watching my son in pain and I could see him physically deteriorating in front of my eyes.
I took him to an orthopedic doctor who said his scan looked fine. She also said that he probably had Cerebral Palsy and I needed to touch base with neurology. Our neurologist sent us to our CP rock star and we got an appointment with her. I was still very confused by which doctor handled which situation at this point. If somebody would write a book on special needs parenting, they would become very wealthy. I would do it, but I’m an idiot on the topic.
Finally get to rock star doctor and she diagnoses him with Dystonic Diplegic Cerebral Palsy. She ordered speech therapy and occupational therapy to accompany his physical therapy. She knew that based on his symptoms he would eventually develop a speech delay. He has a swallow study ordered and they discovered that his thin liquids were penetrating the wrong area of his throat and he suffered from dysphagia. He now has all his liquids thickened and he no longer chokes when he drinks. She prescribed him with a medication proven to reduce pain and muscle tightness in patients with dystonia and his life has been so much better. He no longer screams in pain daily. He doesn’t wake up at night stiff as a board anymore. His OT figured out that his hand movements were mostly sensory related and as long as we let him play in messy textures, his hand movements remain normal and untight. At 18 months old he now has a speech delay just like the rock star predicted. She knew that the brain damage he sustained and shows symptoms of regularly follows with significant speech problems.
What if I had never made it to that appointment because I chose to believe the wrong people? What if those people didn’t brush off each patient or parent as being paranoid googling hypochondriacs? What if we expected more from every medical professional and not just the highly decorated ones? My son’s type of Cerebral Palsy is one of the more uncommon types but that doesn’t excuse the professionals that disregarded me when my son showed symptoms of something abnormal from the beginning. I understand that we don’t want to create something that isn’t there. But, disregarding a parent or patient’s concern is unacceptable and I have experienced it all too much. I spent my entire pregnancy with him trying to convince 2 different OBs that something was wrong. It wasn’t until I bled out on the table that they believed me. Why does it take blood to convince someone? Why does it take a child in pain for a month before finding someone to hear that it’s not “just teething”? We should all expect more. I will forever respect and thank the doctors that saved my son’s life and mine. I am forever grateful for the doctors that told me the truth. I feel as though there are 3 doctors, 1 physical therapist, and 1 occupational therapist that have been wonderful, caring, experienced, knowledgeable, and useful in my son’s life.
There have been a total of 15 medical professionals that could have hindered his progress, ruined his physical being or ended his life before it began that include – 2 OBs, 2 NICU nurses, 1 Neonatologist, 2 Pediatricians, 1 Nurse Practitioner, 1 Neurologist, 1 Developmental Screener, 2 Physical Therapists, 1 Occupational Therapist, and 2 Speech Therapists. They all said he would be fine. They all said he didn’t have Cerebral Palsy. They all blamed his symptoms on something unrelated and treated him improperly. What if I would have listened to this group and not the other?
Based on my observation of his condition for 24 hours a day 7 days a week I can tell you. He wouldn’t be able to walk anymore because the tightness in his legs would have overcome him without the medication he is currently on. He would be exhausted from getting through the day in excruciating pain that Tylenol can’t help. Without the physical therapy he received, his tight muscles could have caused his bones to grow improperly and caused more pain and less mobility. His hands would have cramped into a position that would make him unable to grasp objects such as food and drink. He could have injured himself by now from the involuntary body movements that put him in awkward positions and make him a fall and injury risk. He would be unable to drink and would have been hospitalized for pneumonia or aspiration.
Always follow your instincts.