Primary Children’s Hospital is in Salt Lake City, and serves patients from Utah, southeastern Idaho, Montana, Nevada, Wyoming, and beyond. Each year more than 80,000 children are treated at Primary Children’s Hospital (Children’s Miracle Network).

Unfortunately, most of these children do not live near the hospital and require multiple appointments and/or procedures every year. Not only does the cost of healthcare weigh on the family, but the cost of traveling and taking time off work can also weigh heavily on the family. Expenses can take such a toll that parents are being forced to provide much of their care, which puts an extra burden on the caregiver.

Children often need more than one specialist, requiring more trips and more money coming from the family budget. Medications can also cost a lot. The mental effects on caregivers as they are required to give more of themselves and possibly need to quit a job or drastically cut hours at their job make their financial burden even greater.

I have personally dealt with these hardships, and yet I am considered one of the lucky ones to live so close to these hospitals. I live approximately 45 minutes away from Primary Children’s Hospital.

I have three children with a heart condition called Longed QT Syndrome. My oldest was diagnosed at age four years old. We have spent many days since her diagnosis traveling to Primary Children’s for various appointments because the only pediatric cardiologists are at Primary Children’s Hospital.

When she was six years old, she broke her arm and needed surgery. Because of her heart condition she had to have that surgery done at Primary Children’s Hospital. I had a four-year-old at the time as well, and it was difficult to care for both children at the same time.

This is very difficult for young families with young children because they want the very best care for their children who need specialty doctors, but their other children’s needs also need to be met.

According to a report in Paediatrics & Child Health in 2023, the majority of out-of-pocket expenses related to childcare/homemaking, travel associated with medical appointments, hospitalizations, and device costs resulting in a median cost of over $8,600 in 2017, and $10,100 in 2022. The majority of these costs came from childcare for other children and for homemaking and other beyond routine costs.

Primary Children’s Hospital does have programs to help with payment with medical costs. These are great resources, but do not make up for the hardship of travel. They also have the Ronald McDonald House that will help house those travelling long distances, which is very helpful. But that also does not cover the costs of travel and missing work or the time spent away from other children.

According to CDC, 10 to 15 percent of newborns require specialized care in NICU. These infants often require a level IV NICU, which would require the infant to be transported to Primary Children’s Hospital. Furthermore, according to the CDC birth defects data, about 1 in 33 babies is born with a structural birth defect that requires ongoing pediatric specialty care.

Parents and children need pediatric specialty care closer to them. Families need their financial and mental burdens lifted by having access to the care their child needs without the time, cost, and mental effort it takes to travel long distances.

Here are a few suggestions to help these families:

• Families can discuss their travel concerns with their specialty care doctors and voice their concerns on the after-visit surveys.
• Email the administration at Primary Children’s and Intermountain Healthcare to see if they can build facilities around the areas they serve.
• Write to your legislators to see if we can get funding to help fund more facilities in areas further away from Primary Children’s Hospital.

The family and its need to survive and thrive is essential for the growth of children. I focused on the needs of children with specialty doctors, but it goes far beyond that. Their healthy siblings also suffer as their parents split their time between traveling for their sick siblings and making ends meet.

Every child deserves to grow up in a healthy environment with both parents present physically, emotionally, and mentally. We should help facilitate their resources by making all the needs more accessible.

Andrea Harper is a resident of Clinton.