Erika’s Story

In April of 2005, our daughter Erika Kate, then three and a half years old, was diagnosed with restrictive cardiomyopathy and secondary pulmonary hypertension, a severe form of heart and lung disease. After an extensive work-up at a nearby university medical center, we were told that Erika’s condition was very serious and that she would soon need a heart transplant. We were devastated. To make matters worse, we learned that because of the advanced state of Erika’s heart disease, her lungs had been damaged beyond the point at which she could qualify for a heart transplant. We were told that a new (donor) heart was sure to fail in the presence of Erika’s co-existing lung disease. Her options were limited, her prognosis was poor, and the doctors suggested she may have just a couple more years to live. We were given four options in selecting her course of treatment:

1. We could do nothing and let nature take it’s course.

2. We could seek palliative treatment and hope to prolong her life as long as possible with the limited number of medications that were available to treat her condition.

3. We could get very aggressive with an intravenous medication regimen in an attempt to moderate her lung disease in hopes that she would eventually qualify for a heart transplant.

Or. . .

4. We could pursue a heart-lung transplant.

We were initially in a quandary over what to do. But during the fall of 2005, while under the care of cardiologists at the Children’s Hospital of Iowa and at St. Louis Children’s Hospital, it became clear that Erika’s condition was deteriorating as her disease was progressing faster than any of us had feared. Because of the progressive nature of her disease, and because of the fact that testing had indicated that she was on the cusp of qualifying for a heart transplant, we elected to get aggressive in treating her lung disease in hopes of eventually making her a candidate for heart transplantation. This required several trips to St. Louis Children’s Hospital and three surgical and diagnostic procedures to stabilize her condition and implement the aggressive course of therapy.

By early winter of 2006, it appeared that Erika’s new medication regimen might be helping to stem the advance of her disease. Her symptoms had improved, and we were enjoying some good days with her.

Then in February 2006, Erika contracted a serious viral pneumonia exacerbated by her heart and lung condition. She spent several days in the University of Iowa Children’s Hospital; and we were very concerned she would not survive the acute illness. Erika eventually rebounded from this illness.

In late March and early April 2006, Erika’s cardiologists in St. Louis and Iowa City indicated that Erika’s latest round of testing revealed that her heart and lung disease was continuing to advance steadily. They informed us that while the intravenous medication regimen she started in the fall of 2005 was probably keeping her alive, it had not apparently been effective in allowing her to become a candidate for heart transplantation. We were told that Erika’s disease would likely claim her life within three to six months, and we were seeing nothing in her behavior that led us to believe otherwise.

Anticipating the inevitable, and wanting to make sure we were doing everything we could to help our daughter, we contacted a world-renowned specialist in treating children with Erika’s condition. This doctor has a well known practice in New York City. After reviewing Erika’s medical records, this specialist asked us to bring Erika to New York City for an extensive work up. Results of this evaluation culminated in the recommendation for Erika to undergo a heart transplant under the care of the transplant team at Columbia University Medical Center. After two weeks of waiting in the pediatric cardiac intensive care unit at Childern’s Hospital of New York, a thousand miles from home, we got the call that a donor heart was available. Erika had a heart transplant in early June of 2006. She died 12 days later, at age four and a half, from complications related to her condition and the transplant operation.

From the diagnosis of her dreaded disease, to her eventual passing 12 days after transplant; and all the medications, doctor’s appointments, and hospitalizations in between, we were overwhelmed by our experience. As we sought the necessary medical care for Erika, and dealt with her intensive daily medication regimen, we experienced a great deal of emotional, physical, and even financial stress. We were struck by the lack of resources available to help families cope with the difficulties of a situation like Erika’s.

When we traveled to seek treatment in St. Louis, and ultimately in New York City, we were forced to incur a significant amount of non-medical expenses not covered by insurance. This included hotel costs, food and transportation expenses, and various other “dislocation” expenses. In most cases, there are additional ongoing expenses like frequent co-pays for medications and doctor visits which add to the financial strain. Throughout our journey with Erika, we met other families in similar situations facing similar expenses with limited availability of resources. Our eyes were opened to the fact that at any point in time, there are families all over the country living with this type of scenario.

There are also instances where families are required to be away from home for an extended period of time while their child is hospitalized. If the child is hospitalized long enough, it often means that a parent’s income is suspended and bills at home go unpaid. In our research for the EKF, we became aware of a few families in our state that eventually lost their home over the fact that they were not able to be away from the child to go to work and generate income during the child’s prolonged hospitalization. We have come to learn that placing even a small amount of financial stress, on top of the emotional and physical stress of battling a dreaded illness, can be enough to push any parent over the edge.

In the wake of Erika’s life and death, we desire to make something positive come out of her life and wish to focus on extending her legacy. We formed the Erika Kate Foundation to provide financial and emotional assistance to parents of children with serious cardiac diseases similar to Erika’s condition. There are plenty of charities raising money for research and awareness for various causes. But our experience with Erika, and the conversations we’ve had with other parents and medical social workers, has revealed to us that assistance available to families of kids with heart disease is lacking.

There is a need, and through the Erika Kate Foundation, we can help to meet this need. Through the Foundation’s need-based grant application process, we can identify families who are struggling with similar problems we encountered. We can reimburse these financially overwhelmed families for their travel expenses and defray other living expenses they incur while caring for a child who requires critical medical treatment for cardiac disease.

The EKF will attempt to raise money with focused fund raising campaigns consisting primarily of personal solicitations. As the Foundation garners more support, and as awareness of our mission spreads, we hope to launch bigger fund raising campaigns so we can reach out to more families.

We remain inspired by our journey with Erika, and hope that the Erika Kate Foundation will help ease the financial burden on parents in similar positions; so they are free to concentrate on what matters most—their children.

Sincerely,

Rich and Traci Maynard

Erika’s parents