AAKP Pediatric Kidney Pals E-Newsletter

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Pediatric Kidney Pals - March 2021

Featured Speakers

Barry I. Freedman, MD, FACP

Principal Investigator, Wake Forest School of Medicine APOLLO Scientific Data and Research Center

Marva Moxey-Mims, MD, FASN

Professor of Pediatrics, The George Washington University School of Medicine and Health Sciences

Chief, Division of Nephrology, Children's National Health System

Mariella Ortigosa-Goggins, MD

Associate Professor of Medicine, University of Miami Miller School of Medicine Medical Director of the Kidney/Pancreas Transplant Program, Miami Transplant Institute

Nichole Jefferson

APOLLO Community Advisory Council Member

Kidney Transplant Recipient

AAKP Ambassador

Glenda Roberts

APOLLO Community Advisory Council Member

Kidney Transplant Recipient

AAKP Ambassador

Lori Cooper

APOLLO Community Advisory Council Member

Kidney Donor and Transplant Recipient

AAKP Patient Member

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This webinar is made possible by an educational donation from Vertex Pharmaceuticals.

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Join together on May 1 (5.1) each year to learn and share knowledge about HIGH POTASSIUM, also known as HYPERKALEMIA!

It is important for people living with kidney disease to learn about potassium and to be aware of how much potassium they take in.

Click here to learn more about hyperkalemia and how you can participate in National High Potassium Awareness Day to help raise awareness!

Looking for fun kidney-friendly recipes to make with your little ones?

Check out our AAKP Delicious! recipe card sets here!

Check Out These COVID-19 Resources!

We're Going to be O.K.: Staying Safe, Healthy, and Optimistic During the COVID-19 Pandemic

Action Learning Network COVID-19 Resources for Parents, Caregivers, Patients, and Families

Cincinnati Children’s has three new dialysis devices used for small babies who suffer from acute kidney injury or kidney failure – and Dr. Stuart Goldstein, the hospital's director of the Center for Acute Care Nephrology, was a medical consultant on the technology development.

The machine has precise pumps, Goldstein said, that continuously draw blood from the baby through one side of a catheter that is placed in a large vein, cleans that blood in a filter, and returns the treated blood to the baby through the other side of the catheter. The machine uses a balanced mineral solution to remove the accumulated toxins from the baby’s blood, Goldstein explained, and an additional pump removes excess fluid from the baby through the filter simultaneously.

“This is the first true advancement in acute dialysis technology in over 20 years,” Goldstein said. “Our hope is that we can now treat acute kidney problems in critically ill infants before they lead to permanent damage.”

The world has long had dialysis machines. But they are usually made for adults because severe kidney disease is rare in children, and even rarer in babies less than 20 pounds. Doctors traditionally have used various devices with workarounds to care for critically ill babies in renal failure.

And now, Cincinnati Children's is the first hospital in the United States to have the machines. Hospital physicians and care teams are trained in use of the device and are tracking patient experiences. That education is being shared across the United States.

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The National Kidney Foundation (NKF) unveiled a new clinical tool for pediatric healthcare professionals to assess kidney disease progression in children and help provide more targeted care.

Kidney disease is rare in children in the United States, nevertheless, nearly 10,000 children in the country are diagnosed with kidney failure and require either dialysis or a kidney transplant to stay alive. Identifying and managing kidney disease, also known as chronic kidney disease (CKD), in the early stages give patients the best chance at postponing or avoiding life-threatening kidney failure.

The development of the Pediatric Risk Calculator was led by the NIH funded Chronic Kidney Disease in Children (CKiD) Study and NKF Board member Bradley A. Warady, MD, Chief of the Division of Nephrology and Director, Dialysis and Transplantation at Children's Mercy Kansas City. The tool is specifically designed to assess kidney disease in children rather than adults and will better predict the risk of disease progression than any of the currently available tools.

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It was almost Thanksgiving when Christel Malinski checked her 7-year-old son John David into Children’s Hospital New Orleans. John David, who has Down syndrome, was scheduled for a kidney transplant the following day. Malinski would check into Tulane Hospital the same day for surgery as well, because she was the one donating the kidney.

As Malinski’s surgery came to a close, her kidney was driven from the Medical District to Uptown so that it could be sewn into her son’s small body. Less than 24 hours later, she was back at Children’s Hospital by John David’s side.

“I was so thankful when I found out that I was a match, and I could help him,” Malinski said, recalling the moment she realized she could give her ailing son a kidney. “You just feel helpless as a parent when your child is sick and you can't do anything. But I could do something, and it was such a relief.”

John David was discharged from Children’s Hospital 10 days after the surgery, on Nov. 26 — Thanksgiving Day. And his health has only improved since then. “He's a different child. The joy that we thought he had before is just exponential,” Malinski said, noting that he’s more responsive and interactive. He’s even eating better. Malinski thinks that some problems they had previously attributed to developmental delays may have actually been caused by renal failure.

“To see him blossom post-transplant has just been amazing,” Malinski said.

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