COTA for Ben's Fight

Our Story

A little history on Benjamin…

When I was pregnant, I was followed by a maternal fetal specialist and my OB. All I was told was he had a dilated left kidney and to follow up 2 weeks after birth with an ultrasound of his kidney and to hydrate myself. At 30 weeks my amniotic fluid had dropped a little, so I upped my water to 1 gallon a day. It helped until I was 36 weeks pregnant and then I was in the hospital getting IV fluids and observation. I was monitored very closely. At the end of 37 weeks, I went back to hospital because my amniotic fluid dropped again and this time I was induced and 15 hours later I had a perfect 7 lbs 1 oz little baby boy. During that stay, his weight dropped to 6 lbs 5 oz. But like any postpartum mother, I just wanted to feed my baby. Weekly weight checks and he only gained a few ounces. I also was suffering from postpartum depression and anxiety. 

At two weeks old, Ben got his kidney ultrasound done and he was diagnosed with bilateral cysts and echogenic kidneys. I started doing my own research to find out all I could about his condition. I met with the nephrologist and we did scans and labs. When the labs came back, I was very concerned and messaged the doctor on MyChart to call me ASAP. Before I knew it, we were going back to the hospital. 

At 3 weeks old (May 2023), we were at Greenville Memorial and he was being hydrated with IV fluids, underwent a cystoscopy to look at his bladder and had a gastric tube placed to give him a high volume of renal formula so he could be weaned off of IV fluids. He had a nephrostomy tube inserted as well to help the left kidney drain short term. Genetic testing was done and showed that he and his dad carried the same HNF1b deletion which is a renal cyst and diabetes syndrome and is also referred to as a micro deletion 17q12…a very rare deletion.  Now, Benjamin has started seeing a specialist in Charlotte to start the kidney transplant process, but his kidneys are still working well with no dialysis so far. We are on the lookout for a live donor. My sweet miracle baby boy! Prayers for this precious baby of mine❤️.

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.