Greetings Nurse XXXX,
After today’s visit it has occurred to me that the encounter I experienced today needs to be addressed.
At approximately 10:30 this morning, about 15 minutes into our visit you threatened to call CPS and promised to admit Aiden if he hadn’t gained weight by our next visit. Although I immediately called your statements threatening and made it clear how inappropriate they were I feel that I must clarify why the entire visit was inappropriate and unprofessional.
I am accustomed to meeting systemic bias when coming into the Peds speciality clinic with Aiden but I never imagined you would employ the scare tactics you attempted to use on me in order to coerce me into the path of treatment you felt was best. Being his mother and main care provider I felt that it’s been made clear that his wellbeing is of the utmost importance to me. Your desire to treat him with the replacement of a g-tube I feel is short sighted and does not consider the entire picture of his health and wellbeing, rather it provides a temporary fix for part of his health. As his mother I expect to be able to weigh in on these decisions. Your words today disempowered me as his caregiver and attempted to ignore the expertise I hold as his mother.
As you stated in our encounter, you are aware that at large, CPS is seen as a threat to families, this leads me to wonder why you would not clarify your statements to me when I made you aware of my initial discomfort at the thought. In your words CPS social workers do what they can to keep families together but I am unclear about why we would be discussing the cohesiveness of my family at a GI visit. At present my son is fed, clothed, and cared for by myself and his father without the assistance of any public assistance programs outside of his insurance. The implication here is that I as his mother am at fault for his failure to thrive, that I am in some way negligent and must be “supported” in order for his health to improve. I vehemently disagree with this thought.
At his last visit I asked for a series of tests to be done given family history and his slow growth. This request was denied. Today after I pushed back on your CPS statement, his tests were ordered. This is an especially important point to consider being that directly before, it was implied that I was at fault for his growth. It was only after I demonstrated my ability to advocate for myself that my initial request was honored. I heard you say that you were willing to screen him for celiac disease and hyperthyroidism but no mention was made of diabetes screening. I informed you he has two Young 1st cousins recently diagnosed with childhood diabetes. Was this screening left off because you do not have the clearance to order such a screen? I have called the pediatricians office already (after you refused to screen him initially) and got no response or follow up from his office either.
Given I felt unsafe and threatened I conceded to the other treatments given to me as options for Aiden out of fear and panic. The medication that was prescribed affects mood which leads me to believe that there is a neurological component to the medications interactions with the body. This concerns me, Aiden is still young and developing neurologically, his development as a young man in Baltimore City is at the forefront of my mind. I’m interested in any links you may have to research about the long term effects of PERIACTIN. I of course, will be researching myself. I intend on getting his bloodwork done as soon as his cold resolves. It is in your system that he was seen LAST week for an upper respiratory infection. He had a temperature that he developed over the weekend and I was not comfortable with getting his blood drawn while he is under the weather. As soon as his temperature stabilizes we will get his bloodwork done so it can be processed and tested. His father and I both want to discuss further the endoscopy, as I stated before I conceded to your suggestions based on the power dynamic in play at the time of the appointment but would like more information about risks before moving forward.
Aiden had a Nissen placed upon discharge from the PICU, it occurred to me as I processed our encounter, that the nissen may have a role in how much Aiden can tolerate to eat. Upon inspecting the notes of his visit today I noticed that individually his weight and height are on chart for his age it is his BMI that is below and falling. As his mother, I know that when he grows he first grows up and then out. If anyone were to ask my opinion of my sons growth I would venture to say that we are seeing the beginning of his current growth spurt which would account for his BMI. I am not a doctor but I am Aidens mom which makes me an expert in Aiden. Regardless of the bias you and your staff hold towards me, it must be acknowledged that I have the closest eye on his health.
Before bias is denied, let us first acknowledge that bias occurs in structural ways towards people that present to be in a population that is the recipient of bias. Although you may not feel that biased interactions take place in the office, they in fact do. The WIC discussion that we have every visit is one example. The assumption is that Aiden is not growing because we cannot afford food thus the recommendation to enroll in WIC although we have spoken repeatedly and at length about why WIC is not an option.
The work that I do is to advocate and stand for mothers in the position I was placed in today. I do not take my work lightly and I do not take the fact that I once again became my own client today. It is disheartening that the place that is supposed to be an ally in Aiden’s wellbeing threatened so cavalierly to do the opposite today. Research is showing us over and over again how provider bias and institutional systems of racism and classism are proving fatal for black mothers, children, and families. I hope that you can see and accept my concerns as examples of how bias plays out to rip families apart within the medical systems and I hope we can get back on track with addressing Aidens medical needs without the insistence that his parents are lacking or in some way unfit. I lost a lot of trust today and will hopefully be better supported and represented at our upcoming visit next month. I hope this message finds you well.
Best,
Ana
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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
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