I speak for many mothers in DC when I say that providing proper care for our children born with chronic illnesses requires more resources than we have access to. Whenever I stop to think about Dwayne and all of his needs, I’m faced with the shocking realization that if I weren’t able to coordinate his care, his life would be at risk.
Imagine the fear and frustration of not knowing how best to help your newborn child
Imagine the difficulty of being a new mom in DC with limited financial resources and a baby who has an unknown health condition. Imagine the fear and frustration of not knowing how best to help your newborn child after receiving different diagnoses from doctors, having tried various tests and treatments for two years with no success.
Eight years ago, this is what I went through when my son Dwayne was born.
Trial-and-error has put his life in danger far too often
Since then, my family has spent most of his life trying to determine his condition and how best to care for him. This trial-and-error approach has put his life in danger far too often. Dwayne needs a specialized team to coordinate his care, but these holistic resources are out of reach for many parents in DC — particularly in Ward 8, where we live.
Early in my pregnancy, Dwayne suffered a stroke; he was born with cerebral palsy, epilepsy and hydrocephalus. Because the stroke prevented his pituitary gland from fully developing, he will need hormone replacement therapy for the rest of his life. This hormone imbalance also led him to develop a rare form of diabetes called diabetes insipidus, which if not properly monitored can cause a life-threatening stroke. He is in a wheelchair because of his condition and receives speech, occupational, physical and vision therapy to help him with his fine-motor skills. Though we have now found a routine that works for Dwayne, along the way there were many close calls on his life, as well as many years of unnecessary treatments and frustration.
Even with knowledge, I had trouble finding care for my son
As a patient access coordinator at MedStar Health, I’m well-acquainted with the District’s health care system. Even with this knowledge, I had trouble finding care for my son. Though I identified places where I could get assistance, it never felt like the people there were actually listening to me when I tried to update them on Dwayne’s condition. It always seemed they were simply shuffling him along so they could see the next patient.
For example, one care facility was convinced that Dwayne was completely blind. I knew that Dwayne was born with a limited field of vision, but I also know that my child can see. I see him pointing at things he wants, and playing on my phone late at night. No matter how many times I explained this, the professionals at this facility insisted he needed intensive vision therapy.
Who am I to second-guess the advice of an expert? Who am I to limit my child’s potential? Even though I doubted their suggestions, I had Dwayne undergo this vision therapy for months until a teacher for the blind informed me that he did not meet the criteria for being legally blind. For a parent trying to help their children live their best lives, there’s nothing more frustrating than being ignored and given contradictory information.
For my son, mistakes can be life-threatening
Many times, Dwayne has been hospitalized because someone made a mistake in monitoring his condition. As a parent, can you imagine what that feels like? Every day hoping that the people in charge of his care pay attention to his needs, and every day dreading the phone call letting you know your child has been hospitalized. This is something I still have to live with, even after years of knowledge and research. The importance of having coordinated care cannot be overstated. Having access to these extra resources via the physician’s office would be a game changer.
Though my family has now worked out a good routine with Dwayne — and we’re all happy with his school — we did have to go through heartache to ensure this situation.
We don’t want other families to suffer as we have
In October 2017, an employee at the school was using the Hoyer lift to move my child. Either because of improper training, under-staffing, or neglect, Dwayne was dropped on his head during the lift. The trauma from that experience is immeasurable, as was my fury at the school staff who allowed this to happen. Although the principal assured me that the teachers would go through training on how to properly operate the chairlift, this never occurred due to funding shortages. It is vitally important that we invest in our teachers, both to make sure they are supported in their roles and to keep the good teachers working in our schools.
All parents imagine the worst will happen if they aren’t there, but for Dwayne and me, the worst is too close to home. We can’t wait, and we don’t want other families to suffer as we have.
Cecelia Holmes is a Ward 8 resident.