Does anyone care about me?

Kids from diverse backgrounds often get overlooked, even though we've had piles of reports, numbers, maps, and charts for years and years that all scream about the growing gaps they face. It's like we're all waiting for someone else to tackle the issue. Native American, Black, and Latinx kids all have to deal with these disparities.

Lately, I've been digging into the dire situation of so many Black children, and what I've found is that this problem is hitting hard in rural areas, particularly in what's known as the "Black Belt." The evidence is crystal clear – poverty, race, and where you live play a huge role, and this isn't something new; it's been going on long after the Civil War, showing that racism is still very much alive.

Instead of throwing more stats at you, I want to share stories from my 30-year career in pediatric emergency departments. I won't name names to protect privacy, but I can tell you that I've seen the same story play out over and over again, including just last week.

Hi there, I'm Michael, and I'm now 15 months old. I even got to celebrate my first birthday, which is a pretty big deal for a kid like me growing up in the rural South where things can be tough. My story is a bit like those of many of my neighbors.

I came into this world at just 33 weeks, a little earlier than expected. You see, my mom didn't even know she was pregnant until it was almost time for me to arrive. She's got her own health challenges, and she doesn't have a regular doctor to turn to. When she went to the ER because her belly was hurting, they told her it was me causing the pain. They also discovered that she had high blood pressure and really high blood sugar. So, they rushed her 60 miles away to the big city hospital, where they put her on bed rest and gave her some medicine.

But, even with all that, the medicine didn't seem to help, and a few days later, they decided it was best for me to come into the world a bit early. My mom had to have an emergency C-section because her blood pressure was sky-high, and they were worried about both of us.

My mom spent a whole week in the hospital, and I guess you could say she got lucky because she didn't have any major complications. No stroke or anything like that. As for me, my first three weeks were spent in the Neonatal Intensive Care Unit. That's where I learned how to breathe without a ventilator and how to eat properly before they let me go home. Thankfully, I didn't have the same problems as some of the other kids who were even smaller and born even earlier. I got through it without any long-term health issues. I consider myself pretty lucky.

My mom was over the moon when she finally got to bring me home. That 60-mile drive was long, but my uncle came to pick us up in his car, and the hospital even gave us a car seat.

I'm really fortunate to have an amazing grandmother who takes care of me while my mom goes back to high school. She works nights, and my mom goes to school during the day, so there's always someone looking out for me.

Recently, my mom told me a story from when I was just 5 weeks old. Grandma was at work, and I usually ate every three hours at night. But that night, I guess I seemed extra tired. My mom tried to feed me a little, but then she thought my lips might be turning blue. She called grandma, who got my uncle to pick her up from work and come home. They weren't sure what was wrong, but we couldn't see our regular doctor because we go to a community health center, and they don't have any pediatricians. We had to wait until 9 am for them to open, so at 6 am, we decided to head to the children's ER about 45 minutes away, even though there was a closer rural hospital. Grandma wanted me to see a pediatrician, and she had heard that the rural hospital was struggling and cutting back on services.

When we got to the emergency department, they didn't waste any time. The nurse saw me and took me straight to a room. The doctor came in and said we should move to a bigger room. There, I had two nurses and a respiratory therapist who knew all about kids taking care of me. The ER doctor was also trained in pediatrics. It didn't take them long to put me on oxygen, start an IV, and figure out that I was in what they called "septic shock." My mom cried, but my grandmother was just relieved we were there. The doctor even gave my mom a high-five for recognizing that something wasn't right. He said she saved my life. The respiratory therapist made sure I kept breathing, I got a bunch of fluids and antibiotics, and my color started to improve. An ambulance arrived to take me to the big city children's hospital. Turns out, I had a severe infection caused by a urinary tract infection, and I had some issues I was born with that we didn't know about. The infection was life-threatening, but I was lucky. They admitted me to the pediatric intensive care unit, but within a few days, I was able to go home and would follow up with kidney doctors to see if I needed surgery later on.

Since then, I've been sick a few times, but it's hard to get help between the limited hours at the community center and our transportation challenges. So, my mom usually takes me to the same ER, the one she trusts after that big scare. She also needs a note from a doctor every time she misses school or I miss daycare, so it can be tough to find someone who will see me. I see a different nurse practitioner almost every time at the community health center, but they do their best to make sure I get all my scheduled check-ups and vaccinations. We miss appointments some times because it's not easy to get there.

All in all, I feel pretty lucky. My mom and I are doing okay, and having my grandma around is a big help. I'm grateful for what I have, knowing that many of my neighbors aren't as fortunate.

Is this really how we want to continue to address disparity? Sure seems there are so many ways we could do and should do better. Do we need more data? Deserts of care, lack of pediatricians of color, lack of primary care, poor pay for Medicaid, ignoring long standing racism, poor attention to social problems, inadequate after hours support by phone or tech, internet access reduced offerings or closing of rural hospitals.

Should "luck" be what we rely on? should it be what our patients rely on? Seems like it's their best or only chance.

Note:?As a reminder this newsletter is written from my experience and perspective.?The newsletter does not imply or relay the opinions of others.??The intent is to offer an avenue for dialogue and discussion around important topics in healthcare and healthcare innovation from one doctor’s perspective.??I am a physician and so can only write from my perspective.?If you are clinician, provider, nurse or whatever my goal is to enable you to agree or disagree.?I have no intention to suggest or imply that only the physician perspectives matter.??They do matter but as part of a larger dialogue that can foster better health outcomes. Edited with ChatGPT.