Pediatric Care Deserts: What Are We Asking of Families Who Already Carry So Much?

I recently read an article about pediatric care deserts and the growing number of families across the country struggling to access pediatric healthcare.

The article made an important point: Simply adding more doctors will not solve the problem. We also need to rethink how pediatric healthcare is delivered to children and families.

As a parent who raised a medically complex child, the article stayed with me.

I want to be clear: Pediatric care deserts were not part of my personal experience. My family lived in an affluent area with access to major hospitals, pediatric specialists, and healthcare resources that many families across the country do not have.

I did not have to drive several hours to reach the nearest children's hospital, and I did not live in a community where pediatric specialists were unavailable. I do not want to tell the stories of families facing those barriers as though those experiences are my own.

What I can say is that even with access to healthcare resources and specialists, raising a medically complex child was incredibly difficult.

There were appointments, hospitalizations, medications, procedures, missed work, insurance challenges, and the constant responsibility of managing my daughter's care while trying to hold the rest of our lives together.

That is what makes the issue of pediatric care deserts so concerning to me.

I know how difficult it was to navigate pediatric healthcare when hospitals and specialists were within reach. I cannot imagine adding hours of travel, limited pediatric services, transportation barriers, or long waits for specialty care to an already overwhelming situation.

For parents raising medically complex children, access to healthcare is rarely about one doctor or one appointment. Our children may need pediatricians, specialists, surgeons, therapists, testing, procedures, medications, hospitalizations, and ongoing monitoring.

Now imagine having to travel hours to receive that care.

Every appointment may mean another missed day of work, another missed day of school, transportation expenses, childcare arrangements for siblings, hotel stays, meals away from home, gas, and parking costs.

For families already struggling financially or balancing employment with caregiving responsibilities, the burden can quickly become impossible to manage.

And yet, the child still needs care.

Pediatric Healthcare Access Is About More Than Distance

When we talk about pediatric care deserts, geography is an important part of the conversation, but it is not the only part.

A family may technically have a pediatrician nearby and still struggle to access the level of care their child needs.

A child may need a specialist who practices several hours away. A family may wait months for an appointment. A local hospital may not have the pediatric expertise or resources necessary to care for a medically complex child.

This is why simply adding more doctors will not solve the problem.

We have to think differently about how pediatric healthcare is delivered.

Telehealth can help families connect with specialists without requiring hours of travel, but it cannot replace every physical examination, test, procedure, or treatment.

Regional partnerships between children's hospitals and community healthcare providers could allow more children to receive care closer to home while still benefiting from pediatric specialty expertise.

Mobile healthcare programs, school-based health services, remote monitoring, transportation assistance, and stronger care coordination could also help families access care before a medical issue becomes a crisis.

But these solutions must be designed with families in mind because parents are the ones who will ultimately navigate the systems we create.

What Are We Asking Parents to Carry?

This is the part of the conversation I believe deserves more attention.

We talk about physician shortages, hospital closures, workforce challenges, healthcare technology, and new models of care.

But behind every discussion about pediatric healthcare access is a family trying to figure out how to get their child the care they need.

Someone has to schedule the appointment, take time off work, arrange transportation, find care for other children, and determine whether the family can afford the gas, hotel, meals, parking, and other expenses that come with traveling for medical care.

And someone has to carry the fear of knowing that the care their child needs may not be available close to home.

Parents of medically complex children already carry an enormous amount of responsibility.

We manage medications, appointments, hospitalizations, insurance companies, school accommodations, employment, households, and the emotional toll of watching our children live with serious medical conditions.

For families living in pediatric care deserts, we are adding another responsibility: finding a way to physically reach the healthcare system.

We have to ask whether that is acceptable.

Where a Child Lives Should Not Determine the Care They Can Receive

I recognize that my family had access to pediatric healthcare resources that many families do not.

Having access did not make raising a medically complex child easy, but it did mean that when my daughter needed specialists, hospitals, procedures, and emergency care, those resources were within reach.

Every family should have that opportunity.

A child's ZIP code should not determine whether they can see a pediatric specialist. A parent's income should not determine whether they can afford to travel to a children's hospital. A family's ability to miss work should not determine whether their child receives necessary medical care.

And parents should not be expected to solve healthcare workforce shortages, transportation barriers, hospital closures, and fragmented healthcare systems on their own.

If we are serious about addressing pediatric care deserts, we have to do more than count how many doctors practice in a community.

We have to ask what happens after a child needs care.

How far does the family have to travel? How long do they have to wait? Can the parent afford to miss work? Can the family afford transportation and other expenses? Is the local healthcare system connected to pediatric specialists who can provide guidance when a child becomes sick? Can families get support before their child's condition becomes an emergency?

Most importantly, are parents and caregivers included in conversations about how these solutions are designed?

Healthcare systems understand workforce numbers, hospital capacity, and reimbursement models.

But parents understand what it takes to actually get a sick child through the healthcare system.

There is a difference.

I did not raise my daughter in a pediatric care desert, and I will never pretend to understand firsthand what it is like to travel hours for every specialist appointment or live in a community where appropriate pediatric care is simply unavailable.

But I do know what it means to raise a medically complex child.

I know how much families already carry.

And that leaves me with a question I believe healthcare leaders and policymakers should be asking:

If navigating pediatric healthcare can be overwhelming for families who have access to specialists and major healthcare systems, what are we asking of the families who do not?

We should be listening to those families.

And we should be building a pediatric healthcare system that does not require parents to overcome impossible barriers simply to get their children the care they need.

Tomiyo Williams is a healthcare advocate, health equity strategist, and author of the forthcoming memoir, The Rainbow in My Skye, which explores the emotional, financial, and systemic realities of raising a medically complex child.