A story of distrust and dismissal
Shawn is a mother of four who has delivered all her babies at hospitals in Northern Virginia.
All four children are healthy, but her encounters with US healthcare have shattered her trust in the medical system. Let’s dive into her story.
Shawn had her oldest child, a baby boy named James, in 2003. The nightmare began right after birth. As a first time mom, she was excited to show her new baby to her family, who were waiting in the hospital lobby. She had been told by a nurse that if she put her newborn in the bassinet, she could take him “wherever.” So, wanting her family to see the baby, Shawn started wheeling her baby down the hospital floor to the elevator. Now, the hospital has a policy that states mama + baby must stay on their hospital floor. No one had told that to Shawn. She simply got in the elevator with her baby, with a nurse who didn’t say a word.
She made it all the way to the lobby where her family was waiting, and sat down with them for at least 15 minutes. A white woman (who wasn’t a staff member) saw them and approached security. Security confronted Shawn, and then contacted the Nurse’s station. There was commotion, yelling, and a nurse screamed at Shawn for not knowing the rules. The head nurse and 3 additional nurses escorted Shawn and baby back to their room. Traumatized and humiliated by the experience, Shawn checked herself out that night against doctor’s orders, a day after giving birth.
Almost 3 years following his birth, James was diagnosed with Partial Complex Epilepsy. As he had gotten older, Shawn noticed he would sometimes stare off and not respond. Concerned, she contacted his Neurologist, who told her nothing was wrong and dismissed her as if she were an overactive mom. However, when he got to third grade, his teacher called a meeting to discuss inconsistencies with school work and tests. Once again Shawn contacted the Neurologist, and he finally agreed to an overnight EEG.
The EEG measured his brain activity over a 24 hour period. The Neurologist never called back with the results. Shawn went in for the follow up appointment to get the results. She got there and the doctor didn’t have the results ready. Looking at the results for the first time, the doctor told Shawn James had several seizures but likely not enough to impact his school day. As Shawn remembers, he got mad at her for not noticing these 30 second mini seizures. He never followed up with a final report, so Shawn called and asked for a copy for her records. The final report showed over 60 seizures just in that 24 hour window, and indicated that many seizures are likely impacting his school day. Not tonic-clonic seizures, but 30 second staring spells. Unfortunately, this delay meant that his seizures had been uncontrolled for at least 2 years, increasing his risk of Sudden Unexplained Death in Epilepsy (SUDEP).
“This was a turning point for me, because I realized I couldn’t put 100% trust in what the doctor said. As a Black woman, I know I can’t. “
After her traumatizing experience at the first hospital, Shawn insisted she go to another hospital in the area for her second pregnancy. At the time, Shawn was in between jobs and was on Medicaid, and found the nearest OB who took Medicaid patients. Though Shawn did not feel comfortable with this doctor, she felt she had no other choice. The birth went okay, but the problems started after.
Justin was born in 2006 with blue eyes and blonde hair. Due to the pain she was in following the birth, she had her son stay in the nursery. The next day, she asked three times for her baby to be brought to her, before finally walking to the nursery herself. She walked into the nursery and saw the doctor examining her baby, who claimed she was examining a spot behind her baby’s eye. No one had told her why there had been an hour hold up, when her baby had been born perfectly healthy.
Following doctor’s orders, she took him to see a pediatrician. There was no spot. Shawn believes the hold up was because her baby, with his blonde hair and blue eyes, didn’t fit the mold of being a Black kid. Shawn’s grandfather had blue eyes and blonde hair, but she was never asked about her family history.
Before they were discharged from the hospital, Shawn knew she wanted her son to be circumcised. The doctor reluctantly agreed to do it, but left extra skin. The Pediatrician told Shawn they would have to pay for a plastic surgeon to fix it, something outside their means to do.
Her third child, Jayden, was born three weeks premature in 2009.
It should be noted that with all of her pregnancies, Shawn experienced severe Hyperemesis, which is a rare condition that causes severe nausea and vomiting during pregnancy. She was prescribed Zofran pills with all her children, except her third, in which she was prescribed a Zofran pump. She believes this may be the cause behind her third son’s Autistic-like behavior. It will be six years of non-stop research, countless therapies and therapists later until she was able to receive an appropriate diagnosis for him and finally recommendations for treatment.
“If I don’t advocate and research for my children, I can’t depend on anyone else because the services are not equitable”
For her fourth pregnancy, Shawn was back at the same hospital in Northern Virginia. During her 20-week ultrasound visit, she was given news that her baby may have Down’s Syndrome due to several biomarkers, such as a small nasal bone on ultrasound. With the stress of already dealing with a child with seizures, and another child that is “spectrum”, she asked if the markers could be indicators of anything else. Her OB told her matter of factly, “you’re going to have a Down’s baby.” For two weeks, before getting the results of all the testing done to confirm the Down’s diagnosis, she stressed about financial resources and how they would need to alter their lives and/or jobs to care for another special needs child. Jayce was born 4 weeks premature, without Down’s Syndrome in 2015.
The day after the birth, the doctor came in to examine the baby, and wouldn’t look at or acknowledge Shawn.
Instead she spoke directly to her husband, who is white. At the foot of Shawn’s bed, the doctor commented on the “fine” texture of the Jayce’s hair, and the fairness of his complexion. These comments were off-putting, unprofessional, and made Shawn extremely uncomfortable, but she felt she may have been hormonal. To this day, she cringes at that whole experience and wishes she had confronted the doctor or filed a complaint.
And these stories just skim the surface. For Shawn, these experiences have caused her to lose trust in the medical system. To her, it’s a severely broken system. She is unsure if there is anything white or non-Black providers can do to make her or her children feel safe and well cared for. Since her experiences with pregnancy, she has gone through great effort to switch to all-Black providers for her health care, and has been encouraging her oldest son to do the same. She has made sure to have conversations with her 3 oldest boys, to try and prepare them to navigate our world as safely as possible.
Q: If you could tell future mothers of color one thing, what would it be?
S: Trust your gut, and advocate, advocate, advocate. Don’t worry about being labeled as an angry Black woman. Get second opinions. Do your own research and do what’s best for you and your child.
Take it from this mother. Thank you, Shawn.