Every Child Left Behind

In December of 1997 Alexzander Christopher Jones was eighteen months old when he started having diarrhea. He was living with his father at the time, and at first his dad was not concerned. He took Alex to daycare, told the manager that Alex was sick and went to work. Later that evening, the diarrhea had not abated, and now there was blood in it. That’s when Chris took Alex to the hospital, and called Alex’s mom, Christine. The diagnosis was that somewhere along the way, Alex had contracted e-coli. The prevailing theory is that someone at the daycare center did not wash their hands after handling a dirty diaper and then they touched something that Alex put in his mouth.

Alex stayed at Sara Bush Lincoln Hospital in Mattoon, Illinois for about two days. Then, his kidneys failed and the staff at Sara Bush realized that he needed more expert care than they could give him. They transferred Alex to the Barnes Jacobs Children’s Hospital in St. Louis. Alex was suffering from full-blown hemolytic uremic syndrome. Alex’s kidneys failed because his red blood cells were breaking down. They put him on peritoneal dialysis, and gave him transfusions of packed blood cells. However, peritoneal dialysis is not as efficient as hemo-dialysis, so toxins built up in Alex’s blood, and attacked his brain. He spent a day in a vegetative state, which culminated when he had a seizure along with respiratory and cardiac arrest three days before Christmas.

They kept Alex sedated for the better part of a week, taking him off of the respirator on Christmas Eve. Still, his parents and I took turns sitting vigil at his bedside while the doctors fought to save him. They replaced all of the plasma in his blood twice. By New Years, Alex was awake. Three weeks later, we were chasing him down the hallway with an IV stand while he was temporarily disconnected from his dialysis machine. Alex ended up spending a total of four months in the hospital. His parents, who worked in food service, both lost their jobs, as did I when I told my temporary agency that my grandson had taken a turn for the worse and I didn’t know when I’d return to Chicago.

Barnes Jacobs Children’s Hospital saved my grandson’s life and Medicaid paid the bills. Alex is eleven now (the photo is a couple years old). He’s in junior high, reading at the high school level and his last IQ test measured 127, which is pretty close to the genius level. He looks and acts like a normal kid and is no longer on dialysis. Alex is not completely healthy, however, and he never will be. His kidneys are functioning at around forty percent. The doctors predict that he will outgrow them sometime during puberty. At that time, he’ll need a transplant and the donor who is most likely to be compatible is his kid sister, Beth. Alex is not insurable and he still relies on Medicaid to provide the blood pressure medication and growth hormone shots that he takes every day. And he and Beth will have to rely upon Medicaid to pay for their transplant surgeries, as well as the immuno-suppressive drugs that Alex will need to prevent rejection of his new kidney.

Lately, there have been several cases of e-coli cropping up. Several hundred pounds of hamburger patties have been recalled. What will become of Alex and other children like him if funding for the State Children’s Health Insurance Program disappears or decreases? My Congressman, Timothy Johnson, rubber-stamps every measure that the current so-called Administration sponsors, and he voted to sustain the so-called President’s veto of the bill that Congress passed which would have expanded funding for children’s health care. The man who said there would be “No Child Left Behind” has taken measures to leave every child behind. I would have supported this bill even if I did not have a grandchild who was directly affected by it.

Congressman Johnson’s excuse for upholding the veto was that this program would provide health care for children whose parents’ income was upward of $80,000 a year. He inferred that this legislation would help children whose parents were wealthy. I frankly wouldn’t mind that. My youngest daughter and her fiancé have a combined income of about $60,000 a year, yet they live on a somewhat frayed shoestring. Between the two of them, they have four children, Alex being the oldest. They each pay child support in addition to the food and clothing they buy for the children on weekends when the kids visit or in the summer when the children live with them. Since Alex is not insurable, the cost of his transplant surgery would wipe them out. They would be bankrupt and possibly homeless. My oldest daughter is married to a landscape designer. Their net worth is somewhere in the six-figure range. But most of that money is tied up in the equipment Derreck needs to run his landscaping business. If my granddaughter, Colleen became seriously ill, they too could end up bankrupt and on the street.

Congressman Johnson obviously doesn’t know or possibly doesn’t care how many people are just one paycheck away from homelessness, or what the catastrophic illness or injury of a child could do to a family. He and his Republican cronies need to pull their heads out of the Middle East oil fields and pay attention to the needs of their most vulnerable constituents. Children should not have to die so that the wealthiest country in the world can afford to invade other countries and take their oil.