What's the big deal about diagnoses? When you live in the world of people with disabilities, there is so much emphasis on a diagnosis. Doctors, nurses, insurance companies, therapists, schools....they all want a "label" for the "thing". As a new parent handed a diagnosis after a traumatic event, you kinda feel like you are punched in the gut.
So what is Joseph's diagnosis? Officially, one of them, and the primary one doctors write on all his medical records is:
HIE-Hypoxic Ischemic Encephalopathy
Hypoxic- Lack of Oxygen
Ischemic- Lack of Blood
Encephalopathy- Brain damage/affecting the brain
Joseph's HIE was officially diagnosed by studying his MRIs in the NICU at Inova Fairfax Hospital. His little body was deprived of oxygen and blood for varied periods no less than the 13 hours I was in labor, before his heart gave out, requiring an emergency c-section. Most of the doctors from the Virginia Board of Medicine who reviewed our case indicated the OB should have delivered him no later than after 4 hours of labor given our symptoms of distress.
I remember the neurologist and her reaction when she approached Joseph's father and myself to tell us the news about his MRI. She was physically distraught, and pulled us into a private consultation area they had in the NICU for these types of things. I adored this neurosurgeon, she was pragmatic, although a bit neurotic, but it made her more endearing as she gave us some of most terrible news you could give a parent about their child who almost died during the birthing process.
She showed us Joseph's MRI, and where there was supposed to solid matter/brain tissue, it was liquified. I did not understand what I was looking at the time, but the doctor explained that when there was brain damage on an MRI, it showed up as very bright areas of light on the brain as "calcified tissue". She kept pointing to sections all over his brain, showing us all the bright spots--almost the entire brain was damaged. The front lobes, the parietal lobes....the only part that didn't seem to have damage was the brain stem. The neurologist told us she had NEVER seen a brain that damaged before. I can remember her saying that like it was yesterday. How are you supposed to react when a seasoned professional medical doctor is obviously shaken and disturbed from looking at your child's MRI?
What's weird is that you can physically see the impact of the brain damage on Joseph's skull. The neurologists told us this would happen, but you are never prepared for these things. Since so much brain tissue was damaged, Joseph's brain was not going to grow and expand and push out his skull to a nice uniform shape we are all used to seeing on a human. He has a horizontal ridge in the middle of his skull where the fontanels overlapped because his brain did not have the expected pressure to push them out. A nice military style flat top and a thick head of hair cover most of that, so the only thing you may notice is that Joseph's head is very small.
I feel I can say HIE affects no two people the same way as I've gone through this journey and met other children with HIE. Symptoms can be mild from subtle muscle movement disorders, fine or gross motor delays, to more severe issues with respiratory and digestive systems, requiring feeding tubes, seizure medications, and similar complex medical needs.
Over the years medical advances have provided some hope to help minimize the effects of HIE on newborns. I know things like cooling techniques have been used to help preserve the blood flow to the brain, as well as hyperbaric oxygen treatments. The thing is, I don't believe there is any commercially available option to heal or regenerate brain cells that have been damaged. At least there weren't 15 years ago when Joseph was born.
There aren't any magical treatments that will "fix" Joseph's brain, but maybe one day in our children's future, that possibility will be real. The best thing we can do is provide Joseph the best life he can while he is here with us, which I think we've done a pretty good job so far!
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