We meet a family from Webster who experienced so much exciting with the birth of their second baby, only to be followed a day later with a shocking discovery. Unfortunately, Baby Bentley has Bartter's Syndrome, a rare kidney disorder.
When Bentley Miotke's mom Shauna says her beautiful baby girl is one in a million she's not exaggerating. Bentley was born with Bartter's Syndrome. Bartter's Syndrome refers to a rare group of conditions that affect the kidneys. It's so rare only 1 in 1.2 million people have it.
Shauna says, "The day after she was born her electrolytes were completely out of balance. Our neonatologist says things aren't looking good and they shipped her out right way. She was airlifted to Children's Hospital in Minneapolis."
Shauna explains, "The tubules in the kidney are unable to reabsorb the electrolytes so she pretty much urinates everything out. That was the number one sign when I was pregnant. I had severe polyhydramnios. I had to have 10 amnio reductions before I was able to go ahead and deliver Bentley. It looked like I was having triplets from all the fluid I was retaining from her in vitro."
Shauna and her husband Jamie have to record every ounce Bentley takes in and puts out. Which means they have a portable scale they take everywhere they go to weigh her diapers and a three-ring folder to record the daily data.
Shauna says, "She's on potassium supplements, sodium supplements, Indomethacin to slow her urine output and that's for all the kidney stuff. She also has reflux so she on Prevacid too."
Despite everything baby Bentley has endured, she seems to be taking it like a champ.
Proud Momma says, "She's a pretty happy baby. I can't complain. Even when she is sick, when she gets dehydrated, she is happy and smiling so it's hard to tell when she is sick."
As long as going to the doctor's office is part of Bentley's childhood, Shauna is glad her second home at Avera St. Luke's has become a second family.
Shauna and her husband Jamie along with little Bentley may also be part of a Yale Research Study examining this rare condition to learn more about it. Shauna says both parents have to carry the gene in order to pass it on.