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Nephrotic Syndrome
Saniyah Arnold

According to the Centers for Disease Control, the average weight of a 2 ½ year old female is about 30 pounds. When Saniyah Arnold was hospitalized at Children’s of Alabama at that age, she weighed approximately 50 pounds. Her weight gain, however, was not due to obesity; she had over 20 pounds of excess water in her body caused by a condition called nephrotic syndrome.

“She was not responding to diuretic medications or other therapies,” says her mother, Brie Cash. “Her legs, feet, eyes and even her forehead were swollen. She could not walk at all.” Of even greater concern was the fact that if the edema worsened, it could begin to affect Saniyah’s heart and lung function.

Saniyah was a seemingly healthy toddler until September of 2013, when she developed a cold that would not go away. After several trips to the pediatrician, she was diagnosed on October 1 with nephrotic syndrome, a condition that causes massive protein loss in the urine. As a result, not enough protein is left in the blood; this allows water to move into body tissues, causing fluid retention.

Saniyah’s specific type of nephrotic syndrome is Focal Segmental Glomerulosclerosis (FSGS), which means her illness is further complicated by scarring or deposits in the glomeruli – the tiny tufts of capillaries that carry blood within the kidneys.

Two weeks after her initial diagnosis, Saniyah was admitted to Children’s. After weeks of trying to remove the fluid with protein infusions and diuretics, it was clear that the fluid was not going to come off. Fortunately, through the state-of-the-art Pediatric and Infant Center for Acute Nephrology (PICAN), physicians at Children’s had just purchased new Aquadex Flexflow™ machines specifically designed to remove salt and water through a procedure called “aquapheresis.”

“Saniyah is precisely the kind of patient who can benefit from this machine,” says David Askenazi, MD, and PICAN director. Although aquapheresis has been used for more than a decade to treat adults with congestive heart failure, Dr. Askenazi is among those pioneering its use in the pediatric population to reduce potential consequences of excessive fluid accumulation.

“We have two of the machines here at Children’s, but already have had to borrow a few more,” Dr. Askenazi says. “Because these machines have much smaller blood volumes than traditional dialysis machines, they are ideal in smaller children. The machines were originally designed for adults, but we are adapting this technology for the needs of our patients.”

Children who are critically ill with fluid overload from heart failure, liver failureand sepsis also retain water; they, too, have been benefiting from the use of aquapheresis since it was first introduced at Children’s in September of 2013.

“So far, the machines are doing exactly what we think they should do (remove water safely),” Dr. Askenazi adds. “We want to determine if we might also be able to use them to assist with some clearance of waste materials in patients with renal failure.”

Jessimene Woods Smith, RN, BSN, CPN, and Clinical Therapies coordinator for PICAN, says working with PICAN gives her confidence that her patients are getting world-class care. “The center’s mission is to provide the best available comprehensive multi-disciplinary clinical care, education and research for children with acute kidney injury and neonates with kidney disease,” she says. “Being able to use cutting-edge techniques like aquapheresis helps us fulfill this mission.”

After daily aquapheresis for about two weeks, Saniyah is back to near-normal weight. “We have been able to remove about 20 pounds of fluid,” Jessimene says. “Imagine that – the weight of two 10-pound bowling balls!

“Caring for Saniyah has been very rewarding,” she adds. “To see how aquapheresis is making a change in her is truly remarkable. When she came to us, she was so swollen she could barely move. But with the use of the Aquadex Flexflow™ machine, we were able to see the changes almost immediately.”

After nearly three months at Children’s, it looks as if Saniyah will soon be going home. She is able to walk again and can fit in her old clothes. Brie says she is very grateful for the care her daughter has received.

“All her doctors are wonderful, and I know we are working together for Saniyah’s greater good and for getting her health where it needs to be,” adds Brie. “Our prayer is to be able to manage her kidney problems with medication and diet.

“Saniyah has been a trooper through all this,” she adds. “Her nurses love her and they sometimes fight over who is going to care for her. She loves stickers, and her nurses can’t leave our room without getting her one. They do a great, great job of managing her care and also taking time out to play with her and lift her spirits.”
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