Meet Trae | Patient Stories at Blank Children's Hospital in Des Moines

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Blank Children's Hospital

Trae

Trae was born in October 2007 to his loving parents Emily and Travis. Shortly after birth, doctors became very concerned. Trae was small for his gestational age and had trouble maintaining his body temperature. In the Neonatal Intensive Care Unit at Blank Children's Hospital doctors examined him for these problems and found a dual collecting system in one of his kidney. Ari Auron, MD, a pediatric nephrologist at Blank Children's, was asked to see Trae.

Dr. Auron suspected a very rare disorder. After extensive testing, it was determined that Trae was born missing a gene - the Wilm's Tumor Suppression Gene (WTS-1), which impacts urinary tract development in babies as they develop in their mothers' wombs. Because Trae was missing this gene, he was born with abnormal kidneys.

Trae's family learned that because of this rare condition two life-threatening issues were at play: Trae was at very high risk (90% probability by age 5) of developing a kidney cancer called Wilm's tumor; and that he could rapidly progress to total kidney failure.

To monitor the potential for these issues, for the first 16-months of his life Trae had kidney ultrasound examinations every 6 to 8 weeks to look for signs of the cancerous tumors. He faced many challenges that could impact his development, growth and health including high blood pressure and the potential need for dialysis.

Even with all these problems, Trae's outward appearance, growth and development were those of a normal child. While still smaller in size than most other children of the same age, Trae was very active, walking by 14-months, jabbering, and playing just like any other child.

Faced with these severe health challenges, Dr. Auron, along with the specialists in Iowa City, evaluated what needed to be done for Trae. Since most children with this condition are not diagnosed until the age of 4 or 5, doctors had little information about what to do for a child. Dr. Auron and the other specialists researched the situation and talked with their medical colleagues around the world. Their final recommendation was that Trae should have both his kidneys removed by the time he was 18-months old.

After removing the kidneys, Trae needed to either go on dialysis or receive a kidney transplant, and the doctors recommended that a transplant be performed. They believed the best donor to be a first degree relative (parent, brother or sister). Since he is an only child and because his Mom has multiple sclerosis, his Dad strongly desired to be the donor. Travis was tested and found to be a very good match.

A plan was established that on March 26, 2009, Trae would have both kidneys removed and a new kidney would be transplanted from his Dad at the University of Iowa Hospital. The surgery was a huge success!

Doctors originally told Trae's parents that he would be in intensive care for a week and in the hospital two or three weeks. Trae proved to be stronger than anyone could have imagined. He was out of intensive care in six days and went home from the hospital eight days after the surgery. Travis was in the hospital three days before being discharged.

To date, Trae has recovered completely from his surgery and has not shown signs of rejecting his new kidney. He remains a very independent, strong little boy who only grins when blood is drawn. He has had few problems after his surgery and is a wonderfully happy little boy. He talks continuously and is a joy to all who know him.

Trae's family feels extraordinarily blessed. They are fortunate that Trae's problems were found early. If it were not for Dr. Auron's care, Trae's problems might also have gone undetected until serious problems arose. Today, Trae no longer has kidney failure and is no longer at increased risk of kidney cancer. He will be on medications for his entire lifetime and will need to be carefully watched by doctors, but these are small matters given the many blessings this little boy has provided to so many who love and care for him.