In the weeks before her son Mark's death at just 20 months old, Mindy Gabler was no longer in denial. She knew her son would die, but neither she nor her son's team of doctors at Akron Children's Hospital seemed to know just when or how the end would come.
Mindy Gabler: Some days he would be almost like a normal baby and give you lots of hope. He would stand in his crib. He would point to the cats, he would smile, laugh. Then within anywhere from an hour to 24 hours he would be having seizures, laying flat. You would just not know what the body was going to do.
Mindy and Michael Gabler never found out exactly what killed their son. Doctors called it an unspecified metabolic disease. But it didn't take long for the Gabler's to exhaust the $1.5 million in medical care their insurance company was willing to pay out for one sick child.
Mindy Gabler: We had private insurance through my husband's company. And within the first year of Mark's life we had already reached the lifetime maximum. Then we went into Medicaid/social security and yes, they would cover only so much. And we had to pick if we wanted palliative or hospice.
Currently Medicaid and other private insurance will only pay for one service at a time: Hospice, if the child will likely die in six months, treatment to diagnose a condition or find a cure for a disease, or palliative care, which can include medication to reduce the symptoms of a chronic or terminal illness, as well as counseling for the patient and sometimes family members.
Dr. Sarah Friebert is director of Akron Children's Palliative Care unit. She says making the decision is difficult for parents because young patients don't progress toward death like adults in a predictable downward slope.
Sarah Friebert: They never, or rarely are able to say, OK, I'm stopping now. Parents will always look for a miracle.
The Gablers were spared that impossible decision because Akron Children's continued to look for Mark's diagnosis. It also paid for his palliative care and provided hospice counseling to prepare the family for the eventuality of his death.
The hospital spends about $1 million each year on providing care insurance doesn't cover, Friebert says it will likely recoup only about one-third of the money, which comes from donations. She says children like Mark are entitled to every medical option available, even when it's virtually certain they will not survive to adulthood.
Sarah Friebert: We have made some incredible gains in the area of neonatal care and prematurity where we been able to push back the age of viability... And also in cancer care where we have taken what used to be an overall fatal illness and have raised the cure rates to 70 or 75 percent these days for all children with cancer.
Friebert and the Gabler's experiences with sick children have made the women friends and activists. Both women would like to see Ohio law changed to rersemble that of California, which allows children to be reimbursed for treatment, even if they move back and forth between, curative, palliative and hospice care.
Even knowing how it all turned out today, Mindy Gabler says she would never have chosen to give up on of her son's survival.
Mindy Gabler: There was still that hope because we had seen him turn around so many times. Even though we were told the end was near... as a mother you couldn't believe it because... I just laid there that night watching him {voice breaks} Sorry.
The Ohio Pediatric Palliative Care and End of Life-care Network Conference continues at Akron's John S. Knight Convention Center through Saturday. Kymberli Hagelberg, 90.3.