As soon as Lucas was born I could tell something was wrong by the expression on my doctor’s face. Then I saw bright red tissue sitting on top of Lucas’s abdomen. I found out later that was his bladder. A couple of hours later the hospital transferred Lucas to the neonatal intensive care unit (NICU) at Cincinnati Children’s.
Eric and I met with Dr. Pramod Reddy, a pediatric urologist at Cincinnati Children’s, the next day. We stood together around Lucas’s bassinet while Dr. Reddy explained that Lucas had bladder exstrophy. Basically that meant his bladder was outside his body and not able to store urine, and the bones, muscles and skin in and around his abdomen hadn’t fused properly.
Not knowing what all that meant for Lucas was so scary. But Dr. Reddy was amazing. He explained everything, and even drew us pictures of normal anatomy and Lucas’s anatomy. I was getting pretty emotional, and suddenly Dr. Reddy looked right at me and said “Brittany, I want you to know there’s nothing you could have done or didn’t do that could have caused this.” I think I really needed to hear that.
That same day Dr. Reddy talked to us about the next steps and how the condition could affect Lucas long term. That included explaining some of the possible obstacles for peeing normally and fertility. It really blew my mind that we were having a conversation about my baby’s reproductive health in the NICU. But it was reassuring that Dr. Reddy was already thinking about Lucas’s future.
Lucas spent several days in the NICU. Orthopaedics got involved, and after a bunch of testing Dr. Reddy and the orthopaedic surgeon, Dr. Charles Mehlman, recommended waiting a few months to do the surgical repair. The surgery would involve using hardware called an external fixator to hold the pelvis in position while it heals. But baby bones are too soft to hold the fixators in place, so we needed to wait.
Waiting was good because it gave us a chance to bond with Lucas. But it was also really hard, because like I said his bladder was outside his body! The main thing was that we had to make sure there was always a physical barrier between his bladder and diaper. We used the same sheets of plastic wrap that restaurants use to wrap cookies. Once we got into a routine at home, things settled down. Still, sometimes I would dream that Lucas’s bladder was falling off.
Lucas’s surgery happened when he was 10 months old. Everything was so well coordinated. Dr. Reddy and another pediatric urologist closed Lucas’s bladder and repaired his bladder neck and genitalia. Dr. Mehlman re-shaped and repaired his pelvic bones. After a two-week hospital stay, Lucas came home. The external fixators were removed about six weeks later.
Now Lucas is almost four years old and has two little sisters. He loves trucks and excavators, and is a real chatterbox. Dr. Reddy is so attentive to Lucas and to us when we see him in the clinic. We never feel rushed, and he always takes time to explain things to us. Lucas is getting physical therapy to help him learn how to control his urination and bowel movements. It’s going really well.
Like most kids with bladder exstrophy, it is possible that Lucas will have medical issues down the road related to his condition. We feel so blessed and fortunate to live close to Cincinnati Children’s, and to have these amazing specialists by our side.