Inside an Omaha pediatrics clinic, a father cradled his sick baby in his arms, smiled at her sweet but jaundiced face and sang the words to Leonard Cohen’s “Hallelujah.”
Now, I’ve heard there was a secret chord / That David played, and it pleased the Lord / But you don’t really care for music, do you?
The song was part lullaby, part prayer for 4-month-old Ticvah, whose diseased liver ticks like a bomb inside her tiny 10-pound body. The longer the disease remains in the liver, the greater the hazards to Ticvah’s health. Untreated liver disease can kill her.
To live, Ticvah needs an initial surgery and maybe even a liver transplant — something the Nebraska Medical Center just happens to do very well.
But surgeries, especially transplants, cost extraordinary sums of money — figures with lots of zeroes that would price out most Americans without health insurance, let alone Ticvah’s family from Democratic Republic of the Congo, a central-African nation once known as Zaire. The Nebraska Medical Center is providing care, and Children’s Physicians is monitoring Ticvah’s condition.
But according to Ticvah’s father, Luc Samuel Matumona, hospital bills are growing, the hospital wants to know how it will get paid, and options so far are slim. A fledgling fundraising campaign has raised nearly $3,000. It’s uncertain whether the family could get help from Medicaid, the federal government’s insurance program for the poor. And the hospital has not committed yet to what it could offer in potential charity care.
This makes Luc feel as if he and his family are at the right door but haven’t yet found the right key. It is a singularly frustrating, desperate place for a father to be.
And yet the 36-year-old said he has faith. Luc has faith in God. He has faith in the American health care system, which so far has helped him. And he has faith in the kindness of strangers who have provided medical care, a place to stay and some provisions.
“I realize we don’t live in a fair world,” said Luc, in his home for now, the Ronald McDonald House, a place for families of critically ill children. “But I’m a staunch believer in humanity.”
Humanity will need to come through big time. Luc said Ticvah’s medical bills stand at about $36,000 so far. The ticket on her exploratory surgery could be an extra $80,000. Then if a liver transplant is involved — which would have to include a live donor, meaning another surgery for Luc, his wife or son — then the price tag could reach $750,000 or more.
Officials at the Nebraska Medical Center would not confirm the costs, saying that medical expenses are “a private matter.” Nor would they say whether they would offer a financial break.
“That’s a question we don’t have the answer to at this point,” said Taylor Wilson, a spokesman for Nebraska Medicine.
In a statement released by the hospital, Dr. Harris Frankel, Nebraska Medicine’s chief medical officer, said doctors were in “very preliminary stages” of evaluating Ticvah’s condition.
“Because of that, we are unable to provide a firm diagnosis as to how we will proceed,” Frankel said. He added that the decision to care “for a patient like Ticvah is never taken lightly and is guided by a set of principles and values that are the foundation of everything we do here.”
Ticvah’s name means “hope,” and her dramatic story is a reflection of her family’s hope and persistence.
The first part is pretty straightforward. According to Luc:
When Luc’s wife, Paulette Awetimbi, was pregnant with Ticvah, her doctor in Kinshasa noticed something strange in an ultrasound and sent her to South Africa, where the ultrasound imaging equipment is better. In South Africa, however, Paulette was told she was fine and the baby was fine.
Ticvah was born on Oct. 25 in Kinshasa and seemed like a normal baby at first. Then her parents noticed how her eyes were yellowish and her stools were white. She wasn’t gaining any weight. A doctor thought she had biliary atresia, a progressive disease in which the liver can’t excrete bile. Bile builds up and shuts down the liver, which causes the body to fail. Ticvah’s parents were heartbroken. They thought their baby would die.
Desperate, Luc worked the computer and his many international contacts. A trained Christian minister, he works for an international corporation and speaks fluent English. When he discovered that his baby’s disease didn’t have to be fatal, he screamed in joy and then scrambled to try to get her the surgery she needed.
Problem was, where? Not in Congo, where no one was performing this kind of surgery. Not in South Africa, where doctors were willing to try but hadn’t had a track record. Luc looked first to take the baby to Europe. But the United States, where there was more expertise, seemed to be his best option.
Luc wrote to children’s hospitals across the U.S. but was turned down. Finally a friend in Georgia suggested the Nebraska Medical Center, which has a well-established, well-regarded liver transplant center.
Luc went public on Facebook. He asked friends, family and strangers for donations and raised $6,000 from Congolese people from all over the world. His company gave him a $6,000 loan. The $12,000 was enough to get to the U.S. on a medical visa.
The family — Luc, Paulette, son Laël and Ticvah — landed in Omaha on Feb. 16. They went to the Nebraska Medical Center emergency room on Feb. 17. Then Ticvah, who was sick from the travel and terribly underweight, was admitted to the hospital’s intensive care unit.
Since then she has received follow-up care from pediatrician David Finken, who teaches pediatrics at the University of Nebraska Medical Center and sees patients at Nebraska Medicine and in a Children’s Physicians clinic based at UNMC.
Finken said the baby’s problem could be fixable.
This brings us to the harder part of Ticvah’s story.
It’s one thing to travel 7,500 miles to the other side of the planet. It’s another thing to figure out how to navigate a complicated medical system and pay the large medical bills.
Probably all of us have a medical story about how we felt frustrated or stymied or overcharged or plain confused by our health care system — even in the best of cases, when we’ve got good insurance. Nothing seems to make sense. Certainly not bills that look like they could be paid only with Monopoly money.
This is why Congress is tied up in knots. Figuring out how to pay for health care in America is one of the most pressing issues of our time.
Most people understand that hospitals can’t do everything for everyone for free. If every desperate parent of every sick baby in the country — or the world — showed up at the Nebraska Medical Center’s emergency room doors, the place would be out of business. The med center already said yes to a lot of uncompensated care — nearly $38 million, or more than one-fourth of the center’s $136 million in medical spending in 2015.
That year, Nebraska Medicine counted $20.5 million in “charity care” to people who qualified because of their income. Another $17.4 million was “unreimbursed Medicaid.” This refers to the gap between the full cost and what the government paid.
Yet, Ticvah is here. And her parents are searching for ways to raise the money.
They have a long way to go. Ticvah’s GoFundMe page showed $90 on Saturday. Her fund at the Tennessee-based National Foundation for Transplants had $2,820.
Yet Luc has remained very hopeful. He sees Ticvah’s progress and believes that if he shares his baby girl’s story, other people will be moved to help. He also credits the Nebraska Medical Center for what it’s done for his daughter so far: stabilizing her in a way she hadn’t been back home; helping her gain weight; offering the family this hope.
During a routine checkup Friday at the Children’s clinic inside UNMC, a nurse weighed the naked baby and everyone cheered at the number on the scale: 4.85 kilograms. Or, 10.7 pounds. Ticvah had gained 5 ounces — a move in the right direction. Paulette burst into tears.
“So sorry,” she said in English.
“Why are you crying?” Finken asked.
“Because I’m happy,” she said.
As Dr. Finken cooed and clicked and smiled at Ticvah, she showed head strength and alertness. She smiled. She reacted. She tried to grab Finken’s tie. She cooed back.
What color were her stools?
Luc pointed to his mustard-yellow boots, and Finken said that was good.
These positive signs belied how sick she still is. Her little belly is distended, the result of a swollen liver and spleen.
“She clearly still has liver disease. She’s still malnourished. She’s still very sick,” the doctor said outside the clinic room.
Finken lined up immunizations for the baby and her older brother. He loaded up the family with cans of infant formula. He had the social worker pay a visit and ask about school for 6-year-old Laël, church for the family, and if they needed anything.
Then, out of earshot of the family, the doctor considered what was at stake.
“The takeaway from this whole thing ... is just the depth of sacrifice and struggle that this family has put themselves through to try to find an answer for their kiddo,” he said. “The question you ask yourself is ‘What wouldn’t you do for your child?’ ”
Luc isn’t asking to move here. He and his family miss Africa and plan to return to their middle-class lives there. And he understands that a hospital has to pay its bills. He would like to raise the money in advance to pay for her treatment, but he’s afraid her surgery can’t wait.
“We could get the money tomorrow, but might not have the baby,” Luc said.
And he would know. He and his wife lost a baby daughter two days after she born prematurely, in 2012.
So they will continue to bend heaven and earth to save Ticvah’s life.
Softly, in French, Paulette explained as Luc translated.
“When a child loses a parent, you call them an orphan,” said Luc, as his eyes filled.
“When a parent loses a child? There is no word for that.”