Trisomy Tribulations: Dealing with a double dose of discrimination.
It was the day that Aretha Franklin was laid to rest and I had an appointment for my 20 week anatomy scan. My NIPT test already indicated a risk of Trisomy 18, a genetic condition that I had never heard of in my 34 years of life. I had a pink dress on and my mother (who is a registered nurse) had taken off to accompany me to my appointment. We arrived, the tech did my scan and said “I’m going to get the doctor”. The doctor walked in and went on to tell me about all of the anomalies about Phoenix. From there, I was strongly nudged towards aborting my pregnancy and that I had three days to decide and that I’d possibly have to travel out of state to get such a procedure.
That was the day I realized that I was facing discrimination due to her diagnosis….
As I began to process the reality of what was going on, I also had the epiphany that Phoenix was a Black Trisomy Child. An instant layer of anxiety spilled over me like the warm wax flows onto your car at the automated carwash. “So now I have to be cognizant of being discriminated against for TWO things??”. From there, I connected with SOFT and began reading stories of how everyone had to fight for even basic needs for their children because Trisomy 18 was thought to be incompatible with life. From there, I began to arm myself with what I knew I had to demand once Phoenix Arrived.
Then January 9th, 2019 came…
Phoenix arrived via cesarean and to our surprise, was fair in complexion. Like…..really fair. It was not a huge surprise as my husband is half Creole and his dad’s side of the family are all fair in complexion, too. Hold that thought because I will explain why that I mentioned this later.
Phoenix goes to NICU 4 and is stabilized. Most of the doctors do not look like us and as an African-American in 2019, I am automatically on the defense. Too many times black children are disregarded solely on the color of their skin. Black children are denied care that another white child would be given without second guess. Thankfully, Dr. Scott Osbourne was on service and ended up being P’s biggest advocate and champion. This came as a relief and a surprise as some of the other doctors and nurse practitioner that were people of color spoke of death constantly. After discharge, her cardiologist failed to disclose that her heart function had slightly declined. It was her EP that told us and not her actual cardiologist. I got to thinking if race was a factor, so I searched this doctor’s name within the Texas Children’s heart group only to find that numerous non-black families sang him high praises. My suspicion was then confirmed and we switched to our current cardiologist.
So let’s talk about colorism…
Merriam- Webster’s definition is “prejudice or discrimination especially within a racial or ethnic group favoring people with lighter skin over those with darker skin”. I mentioned Phoenix’s complexion in my previous paragraph because later on in our hospital stay, I was questioned if I was even Phoenix’ mother. Simply put, Phoenix could pass for a biracial child and I am of much darker complexion than her. So for a doctor to seem surprised (or even question) if I was her mother was offensive. I’d often respond by saying “Yes, I am her mother and I want all credit for the 39 weeks I carried her.” Why don’t people understand that black people come in all kinds of beautiful shades? Another instance was when we came back to NICU to prepare for discharge, a Nigerian woman though I was P’s aunt. This goes to show that this ignorance can transcend throughout all races and nationalities. Regardless who it comes from, it’s offensive.
Now Phoenix is 2 years old and I still have my guard up regarding racial discrimination. It is my duty as her mother to always remain cognizant of this. Something that all black trisomy mother have to worry about, too.