For any mother wishing to escape to a beautiful, rural island, Leilani Kailiawa will attest to that fantasy’s challenging reality –– especially as a mom of a child with pediatric feeding disorder (PFD).

Kailiawa, who lives on the Big Island of Hawaii has been hurdling obstacles with resilience and hope ever since she was pregnant with her third son.

In her second trimester, ultrasounds showed Kailiawa’s baby was smaller than expected. It became increasingly clear that she needed monitoring and complex medical care that was only available at Kapiolani Medical Center for Women and Children on Oahu.

Hawaii Island is the southernmost island in the Hawaii chain, a flight away from Oahu. Kailiawa spent six weeks there in Honolulu, away from her husband and two older sons, to be monitored until she gave birth.

The day Kailiawa’s son, Jeremiah, was born at 34 weeks was fraught with urgency. His heart rate was slowing, prompting the doctors to perform an emergency C-section. Kailiawa’s husband drove an hour to the airport to fly to Oahu. He arrived shortly after Jeremiah’s birth to meet his 2.5-pound son.

Jeremiah faced complications that required an early surgery and seven months in the NICU. Except for a quick visit home to spend Mother’s Day with her older sons, Kailiawa remained at Jeremiah’s bedside the entire time –– from early morning until late at night.

It was a difficult start to facing pediatric feeding disorder in a rural setting.

What it’s like to manage PFD in a rural area

When Jeremiah finally left the hospital, he returned home with an NG tube. He would have graduated to the PICU, but the hospital was full. “We were ready to go home, so they allowed us to leave with the NG tube if we learned how to insert it. My husband was confident, but I was terrified,” says Kailiawa.

The family went straight to the beach after months of promising their baby fresh air and a view of the sunset.

Jeremiah’s NG tube came out that first day, and it took time to manage it. As he got older, it became harder to insert his NG tube, sometimes requiring the whole family to hold him down.

There’s no children’s hospital on Hawaii island, and feeding therapy resources are limited. When Jeremiah was one, they traveled every six weeks to Kapiolani Medical Center for feeding therapy. When he was three, a new clinic with a feeding therapist opened an hour from their home.

“In the beginning, we went to feeding therapy once every week, but it was very taxing on our time and financial resources, so we ended up going once a month,” said Kailiawa.

Today, eight-year-old Jeremiah has a G-tube and still struggles with feeding. He had access to early intervention services, but no one is specialized in his specific challenges.

Feeding Matters, which Kailiawa discovered online when her son was three, proved to be a lifeline. Getting support from the organization and other online resources makes Kailiawa wish her seven months in the hospital had been different. “I wish there was some kind of education about feeding so I could help my son. Our resources are limited here in Hawaii, but if we had more knowledge, it would have helped me be more prepared,” she says.

Tips for managing PFD in rural areas

After eight years of supporting their son, Kailiawa and her family offer tips and lessons learned about managing PFD in rural America.

Leverage telehealth services: Whenever possible, use telehealth to consult with specialists. It can save time, reduce the need for travel and provide access to a bigger network of providers.

Build a support network: Connect with other families facing similar challenges. Support groups, both online and offline, can provide invaluable advice and emotional support.

Locally, Kailiawa and her family had a supportive church community they could lean on. She also connected with other parents facing similar challenges online.

Don’t hide your differences: Raising awareness in your community about PFD can help foster understanding and support. For Kailiawa this meant acknowledging that her family has a different journey. “I needed to get used to having people see Jeremiah be fed through a tube used to that, but I thought it was important for us to bring him out into the community and not keep him sheltered,” she says.

Let go of control: As hard as you try, you can’t force your child to eat. Kailiawa used to wonder when her son would no longer need the G-tube. “Then I realized it would be on his own time. Once that was ingrained in my mind, everything else that happened was focused on not being too hard on myself,” she says.

Living in a rural area with a child who has pediatric feeding disorder is undeniably challenging. However, with resilience and community and online support, navigating these challenges and ensuring your child receives the care they need is possible.

If you are a parent needing support, check out our family support resources.