The baby was moving around a lot, while our friendly ultrasound technician took all the standard measurements. She told us it looked like we were having a boy, but "I haven't seen the baby's bladder yet," she said. "You'll have to come back for another look, but your baby has two kidneys and plenty of amniotic fluid." I tried not to worry. Everyone had a bladder, right?

Our baby was diagnosed with bladder exstrophy, an abdominal wall defect in which the bladder is on the outside and is inside out.

Wrong! The next morning, Dr. Alan Retik called me on the phone and talked to me for more than an hour. That telephone conversation was so important to me. Dr. Retik CONGRATULATED me on my baby, something that people had stopped doing because they didn't know what to say. He explained to me that presently the complete repair for bladder exstrophy is done on the newborn, as opposed to a three-stage repair requiring three surgeries, and that yes, my baby would have to have surgery within 48 hours of birth and then be in traction for three weeks. But after that, I would be bringing my baby home!

Whenever I had a question, after an OB appointment or an ultrasound, I could call Dr. Joseph Borer and we could talk about it. Dr. Borer also coordinated for an MRI to be performed of the baby in utero. Things like this will be useful for future research and treatments for bladder exstrophy.

We were able to attend a meeting of the Bladder Exstrophy Support Group. Seeing all the happy babies and children, and being able to talk to all of their parents, was such a relief to us. It showed us that we were not alone in this and also how beautiful and smart these children are. We were also able to take a tour of the NICU and 8 West ahead of time to familiarize ourselves and know what to expect.

Our son, Joey, was born on a Wednesday and his surgery was performed that Friday. The Exstrophy Support Group paid for three nights in a Boston hotel for us, while Joey was in the NICU and I was still recovering from the delivery. Each year the Support Group has a golf tournament to raise money to help the children and their families. I will forever be indebted to the group for their kindness.

Joey has had two more surgeries since, one for an inguinal hernia and another to repair a fistula.

He will most certainly require additional surgeries to achieve continence, but today, he is a handsome, loving, sweet and extremely active three year old, who will be starting pre-school in the fall. People comment all the time that Joey is so healthy looking and how they often forget what a rough start he had.

I sometimes wonder what things would be like if Joey did not have bladder exstrophy, and we didn't have to take this journey; and then I realize that if we didn't, we wouldn't be the same people we are now, and we wouldn't have so many people in our lives. My husband and I have so much to be thankful for and everyday we realize and appreciate everything that God has given us with our wonderful son, Joey.

Written by Michelle Beauregard, mom to Joey