‘They Are Our Village.’ How Cook Children’s Health Plan Helps Families Navigate Health Care and STAR Kids Program.

The last thing Shelly Ogle wanted to do this early in the morning was wait on the phone.

The day ahead was already filled with taking care of her daughter Winslow, who hadn't even taken her four medications during the day because of her medical condition. Plus, Shelly still had to breast pump and then feed her daughter through Winslow’s G-button. 

Shelly didn’t have time to be on hold, but she did know the one person she should call.

“Rebecca Melville. She’s amazing. Rebecca has always been there for me. She’ll call me or I’ll call her and with a snap of the fingers, she gets things done,” Shelly said. “I needed to speak to someone at Medicaid to update them on something. And it was just impossible. I called early in the morning and then I waited and waited. I called Rebecca and ‘Boom!’ everything was done.”

Rebecca Melville, RN, is a case manager and service coordinator for Cook Children’s Health Care Plan. The program is a local, non-profit company that provides health care for STAR (Medicaid) and CHIP members in a six-county service area in North Texas.

“It can be frustrating for parents, especially for someone like Shelly who does not have time to be on the phone all day. She needs to take care of her child,” Melville said. “I have one contact person who works with the state and I can talk to very quickly. If there’s a medication application or an eligibility issue, our contact is very quick to respond to us. Our role at the Health Plan is to intervene on the parent’s behalf and to be a liaison between them and the state.”

Melville has 42 patient families on her current caseload. She speaks to the families regularly. For instance, she speaks to Shelly once a month and then sees her every three months in person.

“And of course if Winslow gets sick, I go visit her in the hospital and when she gets out,” Melville said.

Each month, Melville calls to make sure that Shelly is receiving the services she’s authorized for and everything is working smoothly for her. Through the Health Plan, Winslow receives her formula and feeding supplies, as well as any private duty nursing she needs.

Shelly admits to being surprised that she and her husband, David, even qualified to be a part of the Health Plan and Medicaid. They both worked and had insurance.

“I thought when you were in a certain income or tax bracket, it disqualifies you for Medicaid,” Shelly said. “But after all we’ve been through and as much time as Winslow has spent in the hospital, I don’t care how much money you make, you are going to be broke after this. So I was pleasantly relieved that we not only qualified but continue to receive help today.”

As Shelly’s telling her story, you can hear Winslow, who is 5 years old, playing with her dog and urging her mom to get off the phone so they can go to the movie.

It all sounds so blissfully normal.

But that’s not how things started from the moment Winslow came into this world.

Winslow was born on Jan. 1, 2014, the first baby born in Wise County that year. Soon after her birth, the celebration ended.

Shelly and David Ogle’s little girl was born with a condition called heterotaxy syndrome. Though heterotaxy syndrome is extremely rare – in the U.S. about one in every 250,000 children are born with it --- it is the cause of some of the most complex and complicated heart defects.

Heterotaxy is a disorder that results in certain organs forming on the wrong side of the body, most typically the heart, lungs, kidneys, liver, stomach, intestines and spleen. Sometimes organs may be facing in the wrong direction, may be divided into multiple sections and even missing.

The result is that a child’s organs cannot function correctly, placing the child’s life at risk.

Vincent Tam, M.D., a thoracic surgeon at Cook Children’s, performed complex heart surgery to repair Winslow’s right ventricle that pumped backward.

The next big surgery was to repair her liver flow into the bowel of the child. Many times children who have Winslow’s condition need a liver transplant by the time they turn 2. Winslow is almost 5 and a half and is doing remarkably well and so far doesn’t need a transplant.

Because of her congenital condition, Winslow was born without a spleen and doctors removed her appendix, which was on the opposite side (the left side) of where it is supposed to be on the body.

By the time Winslow arrived home in August 2014, she was quarantined. After a couple of months, blood work came back to say Winslow was strong enough to go out in public for the first time.

With surgeries behind her, now it was time to begin life at home. That meant four doses of medicine a day, feeding tubes, breast pumping, cleaning supplies, and a G-button.

“Winslow is doing great,” Shelly said. “We think she can live a normal life, go to school, have children ... The only thing we think we will have to say no to is no high impact sports. I want her to be a band camp kind of kid.”

For Shelly to make jokes about her daughter’s condition shows how far she and her family have come. She credits the multiple doctors and nurses who looked after Winslow for saving her daughter’s life. And now she has people like Rebecca Melville taking care of Winslow’s needs.

“Rebecca has always been there for me. She’ll call me or I’ll call her and with a snap of the fingers, she gets things done,” Shelly said. “If I were going to refer anyone, it would be Cook across the board. They saved my daughter’s life. All the team members. The doctors, nurses, coordinators, the STAR Kids Program. You know that little say about it takes a village? Well, they are our village.”