ATLANTA — The pandemic is raising awareness about health care disparities in minority communities. Two new studies looked at more than a decade of adverse impacts on Black children, with researchers finding their chances of surviving or even getting much-needed surgery are far lower than white children.
“We didn’t know anything about this before he was born, so it is life-changing,” said Amanda Brown, a mother in Kennesaw. Her son Oliver arrived eight weeks early in 2017. Doctors discovered a heart murmur while he was in the NICU.
Ten months later, baby Oliver underwent open-heart surgery at Children’s Healthcare of Atlanta-Eggleston. In February 2020, he went to Stanford for a follow-up, where the surgeons patched and reconstructed his pulmonary arteries.
“I think it’s a crazy journey. I mean, I think also some things happen for a reason. I think stuff is a blessing too, because you can share with other people your journey,” said Oliver’s father, Robert Brown.
Today Oliver is a healthy, energetic toddler and an example of what’s gone right in the health care system. But Oliver’s story was complete because parents who can afford the time and money to monitor the entire process; afford good health insurance and top medical providers, and have a support network of families undergoing the same procedures may be the exception, not the norm.
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Two new studies released by the American Society for Anesthesiologists use Centers for Disease Control and Prevention data to examine the experiences of Black children undergoing surgery.
One shows Black children are more than twice as likely to die after needing a follow-up procedure for surgical complications.
It’s called “failure to rescue,” and it closely relates to socioeconomic status, access to care and preventive measures. Health conditions played a role too, with Black children facing a higher likelihood of obesity, asthma and sleep apnea.
A second study shows fewer children of color even get to the point of undergoing surgery. Black, Hispanic and Asian children are half as likely to get to the operating room as white children, either by recommendation or a family’s choice.
To unpack these findings, there are many factors to consider, including one getting a lot of attention during the pandemic: mistrust in the health care system.
“We don’t want to pick and choose who can have access to quality care,” said Dr. Crystal Wright, the American Society of Anesthesiologists Diversity Chair, and Associate Professor of Anesthesiology at Houston’s Anderson Cancer Center.
Beyond access to care, Wright notes cultural interactions and understanding are key to communicating what’s ahead, as is representation in the health care system.
“And I think once that equation is almost equal, then it becomes easier, it becomes more accessible for patients,” said Wright.
She also noted that finding someone who has traveled in your child’s path is important to normalize it.
“Then you can ask the right questions. You can find your answers. But in order to be able to do that, you have to be able to have someone that you trust,” said Wright.
That’s something Oliver’s parents found to be key in their journey as they joined a Metro Atlanta support group for pediatric heart patients.
“Oh, it’s huge. It’s such a blessing to have that available,” said Amanda Brown.
She admitted that a factor of mistrust lingered in their own immediate family ahead of Oliver’s initial surgery.
“His grandmother was pushing us out of surgery, like she didn’t want Oliver to have surgery. And I think a lot of times people are apprehensive,” said Amanda Brown.
“Lack of trust type of thing,” Robert Brown added.
“And I do feel sometimes that’s why kids won’t go into surgery like the study said, because their parents don’t trust the provider,” said Amanda Brown.
“You enter a whole different world. People, your family, your friends, they don’t understand. They don’t know what you’re going through, especially with Oliver because he looked you know, normal,” said Amanda Brown.
Wright adds physician-led care and more medical school training revolving around the nuances of culture and communication are needed in addition to facility access to combat the outcomes described in the studies.
“We want all children to have access to quality care,” said Wright.
“Do you think we ever get to that point in this country?” asked Channel 2 investigative reporter Nicole Carr.
“I am hopeful that we’ll find solutions,” answered Wright.
The Brown family joined a support group called Kids at Heart, sponsored by Children’s Healthcare of Atlanta Heart Center.
It gives families of kids with congenital heart defects a chance to share their experiences. It also provides mentoring, family outings and educational opportunities.