Before DJ was born, we were told that his kidneys were filled with fluid (hydronephrosis), but the doctor explained that this is a common condition in uterine and it would most likely resolve by birth. 

On 8/10/04, when he was 8 weeks, we had an ultrasound that revealed that DJ still had hydronephrosis, and that he only had one kidney. On 8/11/04 we took DJ to Children’s Hospital for further testing; this is where we learned DJ had Grade 5 Vesico-Ureteral Reflux, which is a condition where there is nothing in place within the urinary tract to stop the urine from traveling from the bladder back into the kidney. This constant extra fluid in the kidney creates scarring and over time damages the kidney leading to kidney disease if not corrected. 

On 8/27/04, at 11 weeks of age, DJ had his first surgery to reimplant his ureter into his bladder in hopes to correct the reflux and hydronephrosis. This is a very common surgery, and in most cases it rectifies the issue. Unfortunately, DJ continued to have Grade 5 reflux even after the surgery. 

On 10/10/05 when DJ was 16 months old, he had his second ureter reimplantation surgery in hopes to preserve the health of his kidney. Unfortunately, not only did this surgery not correct his reflux, it also created a blockage and we almost lost him. Two days after this surgery he became lethargic and swollen, his kidney was about 3X the size it was supposed to be, and his labs were at dangerous levels. He was retaining his fluids and becoming toxic. An emergency procedure was done at 3am on 10/14/05 where they placed a nephrostomy tube in to drain his urine. The nephrostomy tube ended up causing other complications and infections where DJ again had to admitted to Children’s Hospital. 

On 3/22/06, when DJ was 22 months old, a 3rd major surgery to once again try to correct the reflux and remove the blockage from the previous surgery was done. The chief of urology was the main surgeon in a team with our usual surgeon. This was a nearly 3-week hospital stay as there were some complications surrounding the healing and nephrostomy tube, but again, although DJ’s reflux improved some, it was not fully corrected. 

Over time, the vesico-ureteral reflux, hydronephrosis, and subsequent kidney infections damaged and scarred DJ’s kidney causing Chronic Kidney Disease. 

In 2018, DJ’s kidney functioning decreased significantly so he started to be followed by the renal transplant clinic at Children’s Hospital. DJ’s mom, Kristie, was evaluated by the Brigham and Woman’s hospital living donor center and found to be a match. 

Recently DJ’s kidney functioning started to decline even more and he started to show symptoms of end stage renal functioning, therefore it was decided by the family and renal team that it was a good time to move forward with the transplant.  

The fact that DJ has the opportunity to have a preemptive transplant without having to go on dialysis is such a blessing. However, unfortunately, transplanted kidneys only last on average 15 years, therefore he will need at least 2 more transplants in his lifetime. He will also require immunosuppressant medications for the rest of his life and will be followed very closely by the transplant team. This is why we teamed up with COTA to help raise funds in honor of DJ in order to help with transplant-related expenses now and in the future. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.