The Smith family has spent more than $100,000 on health needs for their 6-month-old son Jackson, and the bills keep coming.
They are one of many families who face the emotional and financial burden of caring for a sick child. Any of these families are likely to tell you there aren’t enough options for financial assistance.
“Well, we’re in poverty now,” said Kellie Smith, Jackson’s mother. “I’m just joking, sort of. But we’re in a completely different place financially than we were before this.”
“This,” is months of medication, surgery and a liver transplant for Jackson, who was diagnosed with biliary atresia, a rare condition affecting the bile ducts in the liver that is found in only 1 of every 20,000 babies.
Within two weeks of his birth, doctors knew Jackson’s liver wasn’t working properly. He spent eight days in the neonatal intensive care unit before going to Children’s Healthcare of Atlanta at Egleston.
Only a few months later, the Rock family found themselves at Egleston for the treatment of their son, Asher. He was diagnosed at age 4 months with retinoblastoma, a rare form of eye cancer, said his mother, Josie Rock.
“I’m in nursing school and I actually found his tumor just by taking pictures of him, because he doesn’t have a red reflex in that eye,” she said.
Asher, now 8 months old, will receive his fifth round of chemotherapy in only four months Monday. Josie Rock said his treatment is likely to extend for several years.
“It’s being put under anesthesia and undergoing laser treatment and cryotherapy to keep the tumors at bay, because we’ve had more tumors pop up since,” she said. “But he’s handling it like a champ.”
Lengthy treatment is something Smith knows all about. After Jackson was diagnosed with biliary atresia, his health quickly declined. They began treatment, including the Kasai procedure, which replaces the bile ducts with portions of the child’s own intestines.
According to Smith, the procedure is rarely permanently effective, and nearly 80 percent of the time will only delay a needed liver transplant, at best.
“It was working and he was doing well,” Smith said. “But then he started to get worse and started developing other things, too. ... Basically, the Kasai had failed.”
This October, Jackson received a liver transplant, and just in the nick of time. By the time of his operation, his skin was nearly orange from jaundice and his stomach was distended to nearly triple its size.
“If he hadn’t had the transplant, within another one or two weeks, we probably would have been burying him,” Smith said.
Jackson is doing well post-op, and has so far shown no signs of rejecting his new liver. Smith said he’s as healthy as she is, but their struggle is far from over.
Similarly, Asher and the Rocks have a long battle ahead of them. Marcus Rock, Asher’s father, said their son can’t be cured with “a one-time treatment.”
“This will be going on for four or five years,” he said. “So for the next five years, we’ll be seeing specialists and pay at least $10,000 or more a year.”
When Smith, a teacher, and her husband Trey, who is self-employed, received the bill from the Kasai procedure, they almost couldn’t believe it.
“The Kasai was $178,000,” she said. “And that will be nothing compared to the transplant.”
Smith said her family has insurance but it doesn’t cover even half of their expenses. Some organ transplants for infants can cost up to $1 million before insurance. The Smiths have yet to receive their bill for Jackson’s operation.
Marcus Rock said the financial burden on their family comes not only from the major expenses, such as chemotherapy treatments for Asher, but from the smaller ongoing costs.
“What most families don’t realize is you suddenly start getting hit with, not just a $10-$15 bill,” Marcus Rock said. “They are all $1,000, $2,000 or more per bill.”
Smith agreed. Jackson’s post-op medications still cost just more than $200 a month.
Both families say the little expenses are also unexpected burdens on a family with a sick child.
For the Smiths, that means sanitizing everything, as Jackson’s likelihood of rejecting his liver will increase with exposure to germs and viruses.
“It seems like a little thing, but when you’re dealing with a child like this, keeping things clean can be a cost,” Smith said. “It’s those things you don’t ever think about, but we have to do it now.”
Marcus Rock, who works as a sales representative for a home health company, said taking off work can affect a parent financially, but often is necessary with a sick child. For Josie Rock, the cost and time dedicated to earning her nursing degree can take a toll.
Extra costs are “the nickel and dime stuff,” and even include traveling to regular treatment in Atlanta.
“You go from, with a healthy baby, the normal cost of diapers, formula ... that kind of stuff, to extra hundreds of dollars a month,” Smith said.
Marcus Rock said no family can truly be prepared for their child to become seriously ill.
“We’re the typical household, and what I mean by that is we have the typical bills,” he said. “Credit card bills, car bills, mortgage, all these bills as you’re just going through life. Then suddenly you’re hit with bills for $2,000-$3,000 constantly.”
Josie Rock said while there are some grants available, most require families to fall under certain income restrictions.
“We don’t qualify for Medicaid,” she said. “You have to have a certain income to qualify for many of these grants that will pay for some of these medical expenses. We don’t qualify for a lot of that.”
Recently, the United Healthcare Children’s Foundation announced a new grant for families in need of financial assistance to pay for children’s care.
“Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child to help pay for medical services and equipment ...” reads a release from the foundation. “Families must meet economic guidelines, reside in the United States and have a commercial health insurance plan.”
For families like the Smiths and the Rocks, $10,000 can help, but it’s only a fraction of the costs to care for their sons.
To offset expenses, both families have led their own fundraisers, including races, T-shirt sales, sponsored dinners and more.
“We have been blessed with a lot of donations,” Josie Rock said. “It’s really a lot of friends and family and churches. We get checks here and there and a lot of people have been helping us that way.”
Smith said her family relies on the Children’s Organ Transplant Association, which helps raise money for a family and will use the money to directly pay the bills for the family, relieving them of one less responsibility.
So far, they have raised approximately $49,000 for Jackson. Their goal through the association is $75,000.
“Without that, and people’s help — not just COTA, which has been fantastic in taking care of the paperwork — but throughout the fundraisers and the people helping, we could not pay for it all,” she said.
Marcus Rock said while they’ve had a great deal of support, they worry a time will come when people are no longer able or eager to help them.
“You don’t want to constantly ask friends and family to give, give, give,” he said. “They’ll give because they know this is costing a lot of us, but all this help is going to stop after a couple of months. Then what do you do?
“Honestly, we haven’t figured that out yet.”