Carter’s Story – Eagle-Barret syndrome (prune belly syndrome)

“Early in my pregnancy, an ultrasound revealed that Carter had a bladder outlet obstruction and might not make it to term. At 12 weeks pregnant, I had an appointment at University Hospital and found that his bladder had popped, and he was surrounded in urine. In Seattle, his bladder was drained with a big needle through my stomach. They used the fluid to test his kidney function four different times, and determined his kidneys were not working at all. The doctor asked if I wanted to terminate my pregnancy.

I was hospitalized for 22 weeks because of premature labor, and to manage the 29 bladder taps on Carter.  When he was born October 26, Carter was very sick and placed on life support prior to being transferred to Seattle Children’s Hospital. The doctors felt Carter had little chance of living past a few weeks. Fluid was going into his lungs and belly. Nine days after resorting to a trial medication, he began to improve.  Carter stayed in the NICU until February before being allowed to come home.  Still, he had to fight for his life. He kept getting blood infections, and was taken by Life Flight to Seattle 10 times. Carter has been in and out of the intensive care unit several times.  Carter now has only 1 kidney and stage 3 kidney disease.  He has had 31 surgeries and many serious infections, and he is only 4 years old.  He is quite the fighter!

Carter’s Diagnosis is called Eagle-Barret syndrome (prune belly syndrome) he has no abdominal muscles and a history of recurrent urinary tract infections with sepsis and septic shock, as well as hydrocephalus, hip dysplasia, scoliosis, a heart murmur and severe blood pressure.  He takes a lot of medications and is fed daily through a G-tube.

Carter started therapy at Children’s Village when he was 4 months old.  He has benefited from speech therapy, feeding therapy, physical therapy; you name it.  Carter also has multiple serious other health issues. Because he is so fragile, a simple cold can become life-threatening for him.  Carter is our little fighter!  It takes all that the Village has to help us and Carter.  I am so thankful for my little boy and for Children’s Village, which has meant so much to Carter and to me.”       Carley Chaney, Carter’s Mom