My aunt had a daughter, her name was Rachel. She would be 30 years old today if she were still alive. When she was a baby, before she turned one she started getting sick a lot and she started bruising easily. My aunt and her husband took her in to the doctors and hospital numerous times. So many times in fact that they started to accuse them of making her sick and harming her. They even called child protective services on them. They had to fight what felt like everyone to figure out what was wrong with their daughter. It wasn't until Rachel was 18 months old that she was diagnosed with Neuroblastoma. It is a very fast acting cancer and nearly half of all cases are diagnosed in children under 2 years old. It was very traumatizing for my aunt. The doctors told my aunt that Rachel had a very good chance of survival and tried all these different treatments, but in the end she only lived a year and a half after being diagnosed.
I remember visiting her in the hospital once. Before we could go into the room we had to put on our gowns, wash up and put on our face masks. The room was bright, but that's about all I remember of it. When the time drew near and she got sicker and they realized that she wasn't going to make it they sent her home with my aunt where she died in my aunts arms. She never had anymore children after that. She didn't want to ever go through the heartbreak of that again.
When Angela was a year old I started spending a lot of time by my aunt who didn't live that far from me. She loved Angela like she was her own. One day I was telling my aunt about what a friend of mine said about Angela needing to be seen by the doctor because Angela wasn't using her left hand like she should be. She wasn't putting any weight on it and she was hardly walking and when she did she fell a lot. I didn't think anything of it. In fact I thought it was normal. My aunt gave it some thought and felt my friend was right. I made the appointment with the doctor who gave me due consideration and we set up a time for Angela to go in to get an MRI done of her brain. He was worried that there was some trauma to the brain, but the MRI results came back negative. She was fine in his eyes. He told me that there was nothing to worry about and if she was still having issues in a year to come back and see him and we would go from there. I didn't know any better so I listened to him.
But it was only a short time later that I was calling him back, but for very different reasons. My aunt was brushing Angela's hair when she felt swollen lymph nodes at the base of Angela's head. My aunt got very upset and worried that Angela had something more serious and life threatening going on. Her worry was infectious. I called the doctor and asked him for a referral to see an oncologist, but he refused to give me one. He told me that I was on Medicaid and it was a waste of taxpayer dollars. He told me they were swollen because she had a simple virus and the MRI would have shown something if it were anything more. He treated me like total crap. Like I was no one and I should listen to the adult. He was very patronizing about the whole thing.
After relating what the doctor said to my aunt, she became ...very angry. She called Children's Hospital and talked to someone there and as it turned out that because I had straight Medicaid I didn't need the referral. We saw the oncologist who looked at the films and took some blood. She was a very nice woman and listened to my and my aunts concerns. She told me that it was just a virus that Angela had, but she felt with the way Angela walked and favored her right over her left that she should be seen by a neurologist. We made that appointment and came back several weeks later. Unfortunately my Medicaid changed to an HMO, which was not taken at the clinic. The situation was explained to the neurologist who only visited once a month and he very kindly agreed to see me free of charge. After looking over the charts and MRI scan and checking her gross and fine motor skills, he was able to make the assessment that she had mild left hemiparesis, which is a form of cerebral palsy, which was caused during her birth.
I was happy that it wasn't cancer, but scared as to what this meant for us down the road. Had I listened to her pediatrician I would not have known what was wrong with her. She was placed in the birth to three program and started physical and speech therapy almost immediately.
Going through this made me realize that sometimes you have to fight the people who are supposed to know best to get the best care for your child. I was very angry about how I was treated and what it would have meant for my daughter had I went on with life taking his professional advice. I'm thankful for the people in my life who have helped me along the way. Who knows where I would be without them in my life guiding me.
I still place my trust in doctors, because yeah, they DID go to school for so many years to learn to care for our health, but I keep in mind that they are humans just like the rest of us. They make mistakes too and when I don't agree with the diagnosis or still have concerns that I feel are not being given due consideration, I will get a second or third diagnosis if I have to. I will advocate for my child's health.
What about you? Have you ever had to fight for a diagnosis of your child?
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