MOUNT VERNON — Last November, when 12-year-old Emma Dean heard the diagnosis Atrial Septal Defect (ASD), a common birth defect that causes a hole in the wall of the heart, the only thing she was worried about was making it to her cheer competition. Her mother, Jennifer, on the other hand had a lot more to think about, including how she and her husband, Heyes, would pay for all the medical bills to come.
Until Emma came down with a case of what seemed like strep throat, she was the picture of health. She competed in cheer competitions (Emma and her cheer team were ranked 14th in the nation in the Summit competition this May), played on competitive softball teams and loved being active. During the check-up, a nurse practitioner identified a heart murmur she thought could have been a result of the small fever Emma was running. Jennifer asked for a referral to Children’s Hospital because of a “gut feeling” that the murmur could be something more.
Emma’s first EKG (electrocardiography) at the Westerville campus of Children’s Hospital returned normal results but Jennifer sought a second opinion with a cardiologist at the main campus of Children’s, Nov. 17. It was to be a short stop on their way to a Cincinnati cheer competition, but Emma’s abnormal EKG results that day, showing an enlarged right side of her heart, merited further testing. Doctors decided to complete an echocardiogram revealing a “sizable,” 15mm hole in Emma’s heart.
“All Emma thought was, ‘OK. So can I keep cheering?’ I mean [she] was upset but [she] really [wasn’t] phased by it,” Jennifer recalled. “And my emotions I think were more, ‘can they fix it?’”
Emma was given the go-ahead to continue competing for the weekend as she had hoped and a surgery to plug the hole was scheduled for December. Before the closure device was put in Emma’s heart, doctors conducted a Transesophageal Echocardiography (TEE) test, allowing them to see that, in addition to the ASD, Emma had PAPVR, Partial Anomalous Pulmonary Venous Return in which an extra pulmonary vein along with tangled and improperly attached veins caused only about 60 percent of Emma’s blood to go where it needed to go, Jennifer explained. This diagnosis eliminated the need for the closure device, but would instead require open heart surgery to reroute the veins at which point the surgeon would also close the hole in her heart.
“When she went in for the device closure, just to be in that Cath Lab was $40,000, that I couldn’t fathom what the open heart was going to be — what would be covered, what wouldn’t be covered,” Jennifer explained. “So the whole time I’m thinking, wow this is going to be one medical bill after another. And I just thought if the Cath [Lab] was $40,000 what in the world is open heart going to be, and ICU, and being in the hospital.”
Jennifer reached out to her Facebook friends to share her concerns — the Deans had medical and supplemental insurance but the supplemental insurance organ policy wouldn’t cover Emma’s heart surgery because she was born with it. It was then that Jennifer heard from friends about applying for the Children with Medical Handicaps (CMH and previously known as BCMH) program through the Health Department. Jennifer was able to get the application from a social worker at Children’s.
“We didn’t even know that [CMH] really existed until somebody had reached out,” Jennifer said. “And I’m thankful — you know sometimes you put things on Facebook and you’re kind of leery — but I’m thankful that I did because of the response that we got recommending us to go ahead and apply.”
CMH provides a second health insurance for children with unmet medical needs under the age of 21. A public health nurse from the health department is provided to families who qualify to serve as a liaison helping them navigate the program and the health care system in general. As the child ages out, the PHN will also help them transition into adulthood care. In Knox County, that PHN is Kathy Spanfellner who has been with the CMH program for 17 years. Spanfellner works with more than 200 families year round.
Spanfellner explained that every state is mandated to have a children’s secondary health insurance and said that CMH, Ohio’s version of secondary insurance, has been in existence since the polio epidemic 100 years ago. CMH covers a wide range of conditions, often in both the diagnosis and the treatment but does not cover behavior or psychological conditions aside from the diagnosis (but not treatment) of autism, Spanfellner said.
CMH, Spanfellner said, allows families the “peace of mind” to know that they can “get the best treatment” without having to worry as much about how they will afford it. Often, CMH will cover the costs of better treatment options than other insurance, such as better insulin pumps for the children in the program. Children who have qualified based on other conditions also receive dental and nutrition coverage from the program until they age out. Spanfellner also noted that once the child qualifies with one condition, treatment options for other issues may also fall under the umbrella of coverage.
Families receive aid based on diagnosis, and financial need if the condition requires treatment. The health department accepts 500 percent above the poverty level, Spanfellner explained. Even families exceeding the 500 percent cap can sometimes meet a cost share deduction, which takes into account the entire family’s medical costs. Once this deduction is met, the CMH program will kick in and help qualifying families for one year.
“Unlike some other insurance where, you know, you’re saying “what did you just say,” they’re trying very hard to get you on,” Spanfellner said. “So we look at child care expenses, what you pay in insurance, how many are in the family. And so all that goes towards that [cost share] calculation.”
Referrals to the program typically come from medical doctors who are CMH providers such as at Children’s Hospital, Spanfellner explained. Pam Palm, a public information officer with the Health Department stated that the health department is working to get a doctor in Knox County certified as a CMH provider but said that currently there are no CMH providers in Knox County. In addition to speaking with CMH providers, Spanfellner suggested parents with questions about the program call her directly at the Health Department 740-392-2200 Ext. 2273.
“I wish I had reached out to Kathy first,” Jennifer said. “Kathy walked step by step by step through the process and was very patient and detailed and just explained the ins and outs of [CMH]. Any time a child has these birth defects, it’s something that they can look into and so just her calling and telling us what we need for the application has been amazing.”
Following her surgery, Emma was on restricted activity but now, nine weeks out, is slowing beginning to return to a normal activity level and is beginning to participate in cheer practices and softball.