“We were at Target trying on shoes.”
That’s what Kennedy Burger remembers about the day her SSM Health Cardinal Glennon journey began. Her ankles and feet were so swollen that her local doctor sent her to be evaluated at the Dan Dierdorf Emergency & Trauma Center at SSM Health Cardinal Glennon Children’s Hospital. There, SLUCare physician Dr. Craig Belsha diagnosed her with nephrotic syndrome, a disorder that causes the kidneys to excrete too much protein in the urine.
“From that day on, we knew things were never going to be the same,” says Kennedy’s mom, Jodi Gruenloh. “Most people think that this kind of thing happens to other people, not you,” says mom.
“But it does,” Kennedy pipes in.
After her diagnosis, Kennedy had to be extremely careful with her diet, limiting her sodium intake and surprisingly, limiting the amount of water she drank to reduce stress on her kidneys. “It was so hard. If I ate too much sodium, my eyes and legs would get all swollen,” she says.
A biopsy revealed that the cause of Kennedy’s nephrotic syndrome was a condition called Minimal Change Disease, which can oftentimes be treated with medication. Unfortunately in Kennedy’s case, they were not effective and she required frequent hospitalizations where she received apheresis, procedure to remove excess fluid from the body.
“She was such a trooper. Nobody wants to see their kid suffer, but Kennedy has never acted like a victim. I think between the two of us, she’s the stronger one. She has helped me get through this!”
After about six months, a second biopsy revealed a further complication of Focal Sclerosis, which often leads to end-stage renal failure. “We were fortunate to be able to do peritoneal dialysis at home. I was nervous at first, but Kennedy did really well with it. She lived her most normal life by being able to do this type of dialysis,” says Jodi.
“And I just slept through it!” Kennedy says.
Eventually, though, all signs pointed to a kidney transplant. “Dr. Belsha was so gentle about it. It was still a shock, but the news couldn’t have come in a better way,” Jodi remembers. “It was scary. This is a major surgery, but it was going to lead to a better life.
Last July, Jodi and Kennedy were enjoying an afternoon at home when the phone rang. Seeing it was Erin, the transplant coordinator, “I kind of lost my air for just a second before I answered,” Jodi says.
“Today’s the day!” came the news from the other end of the phone.
After frantically packing some essentials – and stopping at the library for some books – they made their way to Glennon for surgery.
Today, more than six months later, “Life is great!” Kennedy says. The hardest part about her recovery? She had to wait until mid-October to rejoin her fifth grade classmates. “I wanted to go to back school so bad. I was marking off the days!”
Jodi adds, “For me, it’s knowing we are on to the next step. Her quality of life is better, but there is still so much to keep up with. She takes a lot of medication on a strict schedule and there are lab and clinic appointments… It’s the awareness that after a transplant there are still things that never go away.”
Above all, Jodi gives thanks every day for the staff at SSM Health Cardinal Glennon and to the family of the organ donor. “I am so thankful to the family who chose to give Kennedy the gift of life. My daughter is here because of them.”