March 16, 2023
Jeni and George Slater were shocked when their newborn daughter, Ellie, was diagnosed with kidney failure. Despite their initial distress, they found strength in the support of their community and in their love for each other. Through the ups and downs of their journey, Ellie and her family discovered an inner resilience that carried them through their toughest moments and never gave up hope.
This is their story.
Welcoming Ellie into the world
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During one of Jeni’s last prenatal appointments for Ellie, their world flipped upside down. At 39 weeks pregnant, the ultrasound revealed that their baby had kidney disease and would need to be delivered that very day. They were transferred to a university hospital with more specialized care.
"Once she was born, we found out that Ellie had bilateral multicystic dysplastic kidneys and neither were working. She was immediately placed on a heart and lung bypass machine," Jeni said. "It was a shock to us. We thought we would be bringing home a second, healthy baby. I thought we were so prepared but Eliie threw us for a loop."
Since Ellie's kidneys didn’t develop properly, her lungs didn’t either. She spent two and a half months in the hospital, six weeks on a ventilator, and started dialysis at just nine days old.
"She came home right before Christmas, which was the best present," Jeni said. "We were learning about dialysis schedules and kidney diets. I tried to continue working as a physical therapist, but since Ellie was born, I've stayed home to care for her.
"We became experts at performing dialysis at home. We spent a lot of time learning how to do it until it became a part of our lives. Ellie did dialysis for twelve hours every single night," said George. "I feel lucky that Medtronic, where I work, was extremely flexible with the situation and incredibly supportive. If Jeni needed help with Ellie, I could stay home and provide assistance."
When Ellie was eighteen months, the Slater's received exciting news–the hospital had a transplant for her! Sadly, the excitement didn't last, as Ellie experienced acute transplant rejection just four days after she returned home. A month later, it was clear that the kidney couldn't be saved, and it was removed.
This was incredibly disappointing for the family and difficult for their firstborn, Emma, to grasp: "It was hard on Emma. I would often leave to go to the hospital with Ellie. Emma became scared of blood after watching Ellie do hemodialysis for six months after losing the transplant. It's jarring for a toddler to see her little sister hooked up to machines," Jeni said.
One thing that helped the Slater family feel less alone during this time was attending National Kidney Foundation Kidney Walks, where they met and connected with other families going through similar experiences.
"I couldn't believe how many people were affected by kidney disease. We saw all these children who either had kidney disease or were in a family affected by kidney disease and it really encouraged us. It felt like a community that was there for us,” Jeni said. “We've made a lot of connections through the local NKF office. We, the pediatric families touched by kidney disease, get together and support each other."
Learn more about Kidney Walk and other local National Kidney Foundation events.
Ellie's second kidney transplant
The Slaters adjusted to life after the transplant failed. But, as Ellie grew closer to five, they worried she wouldn't be able to go to school.
"We wanted her to go to school but her dialysis schedule was intense and the doctor wanted to increase it to fourteen hours a day. By the time we were done with dialysis, she would only have six to eight hours outside of the bed during the day," Jeni said. "I became depressed thinking that she wouldn't be able to do anything besides doctor's appointments, therapy, and sitting hooked up to a dialysis machine."
Then in May, they received a call that would change everything—a kidney was available for Ellie. The Slaters held their breath and tried not to get too excited as they'd been disappointed several times before. Some potential kidney transplants went as far as doing all the pre-op for the surgery before the doctors decided against that specific kidney. This time, however, would be different.
"We did the pre-surgery routine but it didn't hit me that this was really happening until the anesthesiologist came with a consent form. I was nervous since she lost her first kidney within five weeks, but we were cautiously optimistic," Jeni said. "She made it through the surgery and the kidney worked. I remember being in the ICU watching a bag fill up with pee. I was so excited. Getting wet diapers again was a miracle."
"It may seem silly to be excited about diapers, but for us, it was transformative," said George. This transformation was incredible to watch. You could see a physical change as she lost fluid retention. You could see how much better she was feeling physically and emotionally. She was always a happy kid, but imagine feeling sick for her whole life and then all of a sudden, for the first time feeling good. She's just permanently smiling, laughing, and enjoying herself with a lot more energy."
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Living life to the fullest
Just two days after the transplant, Ellie came off oxygen and stopped the medications necessary for dialysis. She began tolerating more food and started growing.
"It was a night and day difference after the second transplant. Not being tethered to an oxygen tank or dialysis machine was a beautiful thing," said Jeni. "Before she couldn't go into water because of her port but now she can have real baths and go swimming. We can travel as a family again and do things after dark since Ellie isn't hooked up to a machine, like seeing fireworks and Christmas lights."
It's been five years since the successful transplant, and Ellie continues to thrive. She enjoys going to water parks, playing instruments in music class, and dancing with her classmates at school. She also loves spending time with Emma, who has become an advocate in her own right for kidney disease and people with disabilities.
"We probably did a lot of things wrong, but Emma has come so far. She used to be scared and nervous about everything but now she's quick to stand up for her sister and others," Jeni said. "She's always dressed the fanciest at Kidney Walk and is so great at speaking about advocacy that I told her she could have a career in it or as a lawyer."
See all the ways you can make a difference in the lives of those with kidney disease.
Don’t give up hope
To other families dealing with similar difficulties, George and Jeni recommend holding on to hope and creating a support system with people who know what you are going through.
"Hold on to hope and know that things take time," said George. "It's not always easy going through these difficulties, but it was worth the wait to see Ellie go through the amazing transformations after her transplant."
"As the primary caregiver, you can feel very lonely and isolated so it is important to make connections. I have my group of girlfriends, the kidney moms, who I keep in touch with, said Jeni. “Even if we don't get together in person very often, having someone who understands what you are going through is huge. It makes all the difference."
Join our online community for parents of children with kidney disease.
