Hope Away from Home

Hope Away from Home

By Jordan LaHayePhotos provided by the Savoie Family

The Savoie Family

Inspired by the care their son received at Ochsner, Nina and Joseph Savoieare returning that kindness to the families of pediatric patients.

In November 2017, after five years, Nina and Joseph Savoie

knew that their son John Harris’s medical battle was coming to its end. They called Dr. Patrick Cripe, their Pediatric Intensive Care doctor at Ochsner, on his private cell phone. He told them, “We’ll manage this. We have a plan.” The staff met them at the door of the Emergency Department and took them to the Intensive Care Unit (ICU), and a nurse that knew John Harris and his case was called in. “We’ll keep him as comfortable as we can,” Dr. Cripe said. The Savoies had first come to Ochsner after transferring from their hospital in Baton Rouge two years before. At that point, John Harris, who was born premature, was two years old and had been diagnosed with the rare heart condition, pulmonary vein stenosis. Under the care of Dr. Victor “Sam” Lucas and Dr. Ryan Griffin, he received several heart catheters and was kept on oxygen for breathing issues. As his condition became more and more complex, John Harris’s team of

specialists grew to include Dr. Fernando Andres Urrego for pulmonology and Dr. Mariastella Serrano for gastroenterology. He was just recovering from a scary bout of respiratory syncytial virus (RSV) that kept him in the ICU for 10 days on a ventilator when he got another cold that threatened to keep him there much longer. “Everyone came in and checked on him,” said Nina. “They were really good at communicating among each other, keeping everyone on the same page.” John Harris’s liver and spleen were getting dangerously large alongside his persistent heart and lung problems. “Each doctor was keeping their parts running, but no one knew what exactly was wrong with him,” said Nina. Seeing little progress, Nina and Joseph asked their team of specialists if they could have a meeting to figure out a plan. In a little room in the hospital, the whole team came together and made the decision to consult Dr. Dmitri Niyazov who conducted basic genetic testing. When those results came back inconclusive,

4Summer 2019

Dr. Niyazov wanted to go a step further and conduct a more extensive study called whole exome sequencing. “Insurance wouldn’t cover the test, and normally it takes eight months to get results,” said Nina. “But Dr. Niyazov told us not to worry about the price. He said, ‘We’ll take care of this, we need to figure out what is wrong with him.’ We got the results in ten days.” The test revealed that John Harris had a rare condition called Niemann-Pick Type C, in which genetic mutations make it difficult for the body to metabolize cholesterol and lipids, resulting in the buildup of fats in the liver, spleen, lungs and brain. There are around 500 known cases of Niemann-Pick Type C in the world, and there is no known cure. “They told us he would eventually start to lose skills,” said Nina. “When we got there, he was walking a little, had a few words. He would lose all of it.” After 75 days in the ICU, John Harris went home. “Everything had changed,” said Nina. “Our doctors had never seen a case before, but they told us, ‘We will do this with you.’” Because typical onset of Niemann-Pick Type C is age seven, the Savoies immediately had their older son tested. When the results came in, knowing how anxious they were, Dr. Niyazov personally called Nina even though it was 9 pm. Thankfully, he didn’t have it. “I’ll never forget that day, how relieved we were,” said Nina. More doctors at Ochsner joined John Harris’s team, including pediatric neurologists Dr. Diane Africk and Dr. Aaron Karlin, who helped the family develop rehabilitative solutions to maintain as much of John Harris’s motor skills and abilities for as long as they could. During all of this, Dr. Urrego was working behind the scenes on securing FDA approval for compassionate use of a clinical trial drug that was being tested in Chicago. Because of his oxygen dependence and the severity of his illness, John Harris wasn’t a qualified candidate for the trial. However, compassionate drug use would allow the doctors at Ochsner to administer the experimental drug to him outside of the trial. After a lengthy legal process, John Harris was approved to start treatment in the summer of 2017. “We didn’t even have to fight for the drug,” said Nina. “Our doctors did all of the fighting for us.” John Harris began receiving infusions every other week, bringing hematology and oncology onto his team. “He was losing a lot of skills at that point,” said Nina. “He couldn’t sit up anymore or hold his head up. We wanted to see if it did anything at all, even just give him some comfort — help him breathe easier, be able to move.” John Harris’s condition wasn’t improving and at the end of the year, the family began to have more serious conversations about the end. Because of his use of the clinical trial drug and the use of the ventilator when things got bad, John Harris wasn’t qualified for hospice care, “but our doctors were helping us, managing payment and comfort medications,” Nina said. On the day that he passed, all of John Harris’s doctors and nurses, many of whom had been battling with him for most of his life, came by to see him.

John Harris Savoie at Ochsner

“He wanted to see everyone, wave at everyone as they came by,” Nina remembers. “He was sedated and intubated and doing the itsy-bitsy spider. And once he had seen everyone, only after — he passed away in his favorite place.” After John Harris’s death, Joseph approached their doctors, knowing that surely there were still some unpaid bills to settle, things that insurance didn’t cover. “They came back and said, ‘nothing,’” said Joseph. “They never sent us a bill. We had decent insurance, but there was a lot of things that it wouldn’t have covered. We spent 90 nights in the Brent House Hotel, not to mention the genetic testing.” Joseph learned that some of their bills had been covered by the hospital’s Pediatric Family Assistance Fund, which serves to help minimize the expenses of long-term illness for children and their families. Joseph and Nina wanted to give back to the hospital that had gone to such lengths to care for their son, and they wanted to do something to make such a devastating experience easier on other families. Shortly after John Harris’s death, they made a donation to the Pediatric Family Assistance Fund in his name and they encouraged family members and friends to donate in lieu of flowers or dedications at his funeral. They’ve continued donating ever since. “My hope is that families who don’t have the means or support levels that we had from our family and friends, that they are able to experience this without worrying about money,” said Joseph. “They have enough to worry about.” Nina said that at Ochsner she felt like there were people fighting for her son. “My biggest hope for other families is that they have just one thing they don’t have to fight for,” she said. “You fight a lot, every little thing. I hope that they have what we did, that someone comes and just says, ‘I know you need this. We’ll take care of it.’”

If you would like to support families facing the illness of a child through the Pediatric Family Assistance Fund, please visit ochsner.org/pediatricassistance or contact Traci Lucas, Director of Development, at 504-842-6055 or traci.lucas@ochsner.org.

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