After waiting half her life for the donor kidney she has needed since birth, Aubree Shepperbottom is alive, free and healthy.
The three-year-old’s parents Lisa Lehner and Matthew Shepperbottom are relishing the relief of the lifesaving gift from a deceased donor. Their only child was born with a rare inherited kidney disease that saw both her kidneys removed in the first two weeks of life.
But for Aubree, the biggest excitement is in her new toileting abilities.
“I had to explain to her that she was weeing,” Ms Lehner said. “She thought it was hysterical.”
A scan at 32 weeks gestation revealed large cysts on Aubree’s kidneys, the body’s waste disposal system.
“Her kidneys were so enlarged and pushing on her lungs, so they were underdeveloped,”Ms Lehner said.
“The initial prognosis was she wouldn’t be able to come out and breathe on her own.
“They were going to let her pass away, either while I was giving birth or within the first few minutes.
“The baby room had already been done. Then we had to prepare ourselves for planning a funeral.”
But after typing ARPKD into the Facebook search bar — the initials for her incurable condition autosomal recessive polycystic kidney disease — Ms Lehner found examples of children who were thriving. A plan was hatched for treatment after birth.
On her second day of life Aubree was transferred to the Royal Children’s Hospital.
The next day, one of her kidneys was removed and she was connected to peritoneal dialysis to support the toxin-filtering role of her remaining, damaged kidney.
But there was not enough room in her swollen abdomen for the treatment to work. Aubree’s second kidney was removed nine days later.
After four months in hospital, she was discharged and hooked up at night for dialysis, a lifesaving wash of her blood.
In November 2016, as Aubree reached 10kg, she was added to the organ donor wait list, joining 1400 other Australians waiting for a match.There were no false alarms, just a single call from the RCH to say it had a match.
“But it’s bittersweet. You think about where that organ has come from and you know there is a family mourning at the same time we are celebrating,” Ms Lehner said.
Aubree’s story has inspired her friends and family to sign up as organ donors.
“I just want her to have a normal life now,” Ms Lehner said.
Words Brigid O’Connell, photo Herald Sun.