My Breastfeeding Journey - How We Dealt With Bladder Exstrophy

By Rachael Calk

As a child, I was always around women that breastfed. I never thought much of it until I became a Mom myself and decided to breastfeed. That's when I realized that my family was more open to breastfeeding than the average family. My Dad is one of my biggest supporters of breastfeeding (of course, after my husband, who is the best support system anyone could imagine).

When I was pregnant with my firstborn, I decided early on that I would breastfeed if everything worked out for me.

However, I learned immediately after my son was born that this would not be as easy as I had imagined. My sweet boy was born with a rare condition called Bladder Exstrophy, and we didn't know anything about it until I delivered him. In short, his bladder was on the outside of his body. Doctors rushed him to NICU at a hospital an hour away immediately after I gave birth. My husband joined him, and I was left to begin this breastfeeding journey alone without my baby.

I was devastated, living in a nightmare, clouded by the grief of what my "normal" delivery experience should have been. The local nurses didn't know how to adequately help me at the hospital where I delivered my baby, so I called my best friend Laura, an IBCLC. She FaceTimed me and helped me figure out my pumping situation immediately. I pumped around the clock every 2-3 hours until I could get to my baby.

My other best friend took the syringes of colostrum I had collected and delivered them to my newborn boy until I could make it there. After that, the NICU decided to give him a small amount of formula until everything was back to being semi-normal for all of us.

I delivered him at 2:35 AM on a Wednesday, and I was at the NICU he was sent to by Friday morning. They immediately helped me work on latching him with their local IBCLC. Using my colostrum in a syringe to help get him interested in breastfeeding, he latched successfully, and breastfeeding became a natural experience for both of us.

However, this was just the beginning of our experience, because my son had another major surgery when he was around three months old, and I was determined to continue breastfeeding him. I pumped every 2-3 hours during our ten-day hospital stay when he couldn't latch. This included his time in ICU and the recovery ward until he was rested enough to breastfeed again. There were many ups and downs to getting back on track, but eventually, we got there. I pumped around 38 bottles while we were in the hospital, which was far more than we needed before we returned home. I was fortunate to be able to donate the majority of this milk to another mom in need when we concluded our stay there.

Once out of the hospital, we had to care for him in a body cast for two months. This care included the challenge of nursing him, but I was determined, and we made it happen. We also nursed through many doctor visits, traveling across the country and in all the places our journey took us.

My long-term goal was to breastfeed him until he turned two years old, and we successfully did so. He weaned all on his own shortly after his 2nd birthday, and, soon after, I found out I was pregnant with his sister.

Overall, our experience will forever be something I am incredibly proud of. My son is completely healthy and as tough and fun as any 3-year-old boy can be. I'm now back to breastfeeding our daughter, and I love that I can do so.

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