McKinley and Twin Brother

McKinley with her twin brother.

In honor of World Kidney Day, On The Pulse shares the inspirational story of 5-year-old McKinley Miller who was born with just one kidney that did not develop normally. “She’s our little miracle,” said McKinley’s mother, Jennifer Miller. “We want other people to know there’s always hope. All you have to do is look at McKinley and see what she’s overcome.”

When Jennifer Miller learned she was expecting twins she was overjoyed. Unfortunately, Miller’s joy quickly turned to uncertainty. At her 20-week ultrasound, Miller was told something was wrong with one of the babies.

“I could tell they were looking for something that wasn’t there,” said Miller. “I knew something wasn’t quite right.”

Baby McKinley was prenatally diagnosed with kidney disease and was missing one kidney. She suffered from a rare combination of complex developmental problems affecting multiple organs in her body, including her kidneys, heart and rectum.

“We chose to stay positive,” said Miller. “We were told we may lose her, but I refused to focus on that possibility. I kept focusing on having both my babies.”

At 33 weeks, Miller went into labor. Immediately after birth, baby McKinley was rushed to Seattle Children’s Hospital for treatment. Due to McKinley’s complex condition, she would need to be seen by multiple specialists at Seattle Children’s. Only hours after birth, she was in the operating room for what would be her first of many surgeries.

Home away from home

McKinley in NICU

McKinley in Seattle Children’s NICU.

McKinley stayed inpatient at Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) for a month before she was finally able to leave the hospital for the first time in her short life. The family knew she would have a long journey ahead, but they were ready to take each day one step at a time.

In her first year, the family visited the hospital three times a week to see various specialists at Seattle Children’s from the Heart Center, gastroenterology and nephrology programs, among others. The one question that remained unclear was how long her one kidney would last on its own before she would need a transplant.

“We knew McKinley would likely need a kidney transplant at some point,” said Dr. Joseph Flynn, division chief of nephrology at Seattle Children’s, ranked by U.S. News & World Report as the third best nephrology program in the nation. “Her kidney function over time was slowly deteriorating. She was not only missing a kidney, her remaining kidney was not operating properly. Our goal was to provide treatment that would help to manage her kidney disease and delay her need for a transplant.”

The family visited Seattle Children’s frequently over the years to check on the deterioration of McKinley’s remaining kidney. Each time, they hoped for the good news that she was not yet in need of a transplant.

Today, McKinley is 5 years old and Flynn has only had good news for the family.

McKinley

McKinley,5, plays outside in the snow.

“The goal for all of our patients is to have as normal of a life as possible through management of their disease,” said Flynn. “She’s a great example of just that. She’s grown and developed normally over the past five years and continues to do well. Diagnosing significant kidney problems at birth allows us to begin intervention immediately in the neonatal period, which we’ve seen leads to improved outcomes in terms of growth and development.”

McKinley’s kidney has outlasted what both doctors and the family originally expected. By simply looking at her, no one would ever guess the journey she’s been through.

“She’s just like any other little girl, with one caveat: we just need to make sure she gets enough water and stays hydrated when she runs around with her twin brother,” said Miller. “If you saw her today, you wouldn’t think anything is wrong.”

Eventually McKinley will need a kidney transplant at Seattle Children’s, but her future looks bright. Seattle Children’s is a national leader in caring for babies, children and teens with kidney conditions, including the most complex disorders. Seattle Children’s also has one of the top five kidney transplant centers in the country.

“Our doctors at Seattle Children’s are like family,” said Miller. “We even send them Christmas cards. We’re just so blessed they’re in our backyard. I don’t know what we would have done without them. McKinley is where she is today because of our doctors. How can we ever thank them enough for that?”

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