Trae’s family also learned that because of this rare condition two major, 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. It was also known that he would rapidly progress to total kidney failure. For the first sixteen months of his life he had kidney ultrasound examinations every 6-8 weeks to look for signs of the cancerous tumors. High levels of protein in his urine indicated that he might develop and grow more slowly than other children because the protein in the food that he ate was being eliminated from his body rather than building his body. Ultimately, kidney failure would lead to the need for Trae to be on dialysis, a very serious situation in a young child. The kidney failure also resulted in Trae having very high blood pressure which was treated by giving him medicine twice each day almost from the day he was born. The high blood pressure, if not treated, could eventually injure his heart just like as older person with congestive heart failure.
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 fourteen months, jabbering, and playing just like any other child. He has always been inquisitive, loves to play patty-cake and “so big”. He has a wonderful disposition and is happy most of the time demonstrating a quick smile and a very independent nature. He is fond of milk, cereal, yogurt, fruit, vegetables, hot dogs, and macaroni and cheese.
Faced with these severe health challenges, Dr. Auron, working with a wonderful physician in Iowa City, Dr. Patrick Brophy evaluated what needed to be done for Trae. Since most children with this condition are not diagnosed until the age of 4 or 5 when they have complete kidney failure or, more tragically, present with kidney cancer, doctors had little information about what to do for a child diagnosed before any of these terrible conditions were present. Dr. Auron and Dr. Brophy at the University of Iowa researched the situation and talked with their medical colleagues throughout the world. Their final recommendation was that Trae have both his kidneys be 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. Dialysis for a baby Trae’s age can only be done in Iowa City and must be done 6 days each week. This is not a good idea both from a growth and development stand point and from a family stand point. The doctors recommend 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 since his Mom, Emily has multiple sclerosis, his Dad, Travis, strongly desired to be the donor. He was tested and found to be a very good tissue 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 Travis as the donor.
On the day of the surgery Trae was taken to the operating room and prepared for the surgery by having several intravenous and arterial lines inserted. Shortly afterward, Travis was taken to a next door operating room and his kidney was removed laparoscopic through a small incision in his abdomen. The kidney removal was timed so that surgeons removed both of Trae’s kidneys just as the kidney was removed from Travis so the transplant could immediately begin. When the kidney was removed, the transplant surgeon, Dr. Allen Reed was amazed at its large size and had to revise his plans for the way the kidney would be inserted in Trae’s tiny body. About ten hours after the surgery started, Trae was taken to the recovery room and then transferred to pediatric intensive care. This was a scary time for Trae’s mom, Emily when she saw him with seven intravenous and arterial lines, on a ventilator, in a warmer and with a huge incision from his rib cage to his lower abdomen. Meanwhile her other loved one, Travis was in another part of the hospital recovering from his surgical procedure.
Originally, doctors told Trae’s mom and dad that Trae 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. Trae will be on immunosuppressive drugs for the rest of his life to prevent rejection of the kidney. Trae sees his doctors every week or two for routine bold work and check ups. To date, he has recovered completely from his surgery and has not shown signs of rejecting his new kidney. He takes progressively fewer medications and has begun to gain weight. 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 by God. They are fortunate that Trae’s problems were found early. Other children with this condition are often not diagnosed until they actually have Wilm’s tumor or when their kidneys fail. 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 blessings that this story of hope has provided.