Benjamin is 3 years old.

But his story started long before he was born.

During my pregnancy, I was followed closely by both my OB and a maternal fetal specialist. I was told that Benjamin had a dilated left kidney, and we would follow up with an ultrasound after birth. At 30 weeks, my amniotic fluid dropped, and I did everything I could—I drank a gallon of water a day to keep things stable.

It worked… until it didn’t.

At 36 weeks, I was admitted to the hospital for IV fluids and close monitoring. Then at 37 weeks, my fluid dropped again, and I was induced. Fifteen hours later, I met my perfect baby boy—7 pounds, 1 ounce.

My miracle.

But shortly after birth, his weight dropped to 6 pounds, 5 ounces. Like any new mom, all I wanted to do was feed him and help him grow. We went to weekly weight checks, but he only gained a few ounces at a time.

At the same time, I was quietly battling postpartum depression and anxiety.

At two weeks old, Benjamin had his first kidney ultrasound.

That’s when everything changed.

He was diagnosed with bilateral cysts and echogenic kidneys. I immediately started researching—trying to understand everything I could. We met with a nephrologist, ran labs, and when those results came back, something didn’t feel right.

I messaged the doctor and asked them to call me as soon as possible.

Not long after, we were back in the hospital.

At just 3 weeks old, in May 2023, Benjamin was admitted to Greenville Memorial. He received IV fluids, underwent a cystoscopy to evaluate his bladder, and had a G-tube placed so he could receive high-volume renal formula and be weaned off IV fluids.

He also had a nephrostomy tube placed to help his left kidney drain.

Genetic testing gave us more answers—and more questions.

Benjamin and his dad both carry an HNF1B deletion, also known as 17q12 microdeletion syndrome. It’s incredibly rare and associated with renal cysts and diabetes syndrome.

Since then, we’ve continued this journey one step at a time.

Now, Benjamin is being seen by a transplant specialist in Charlotte as we begin preparing for a kidney transplant. His kidneys are still functioning, and he has not needed dialysis—something we are so grateful for.

He is currently active on the deceased donor transplant list, and we are also searching and praying for a living donor.

Through it all, Benjamin continues to be our sweet, strong, miracle baby boy.

This blog is where I will share his journey—the highs, the lows, and everything in between.

And above all, we hold onto faith, hope, and the belief that his story is far from over.

Please keep our precious boy in your prayers.