Our first child
In September 2001, my husband and I found out that we were going to have our first baby. We were so excited to see the baby at our first ultrasound appointment and maybe even find out if we were having a girl or a boy!
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?
At the follow-up ultrasound, the doctor scanned me for more than an hour, once again trying to find our baby's bladder filling, but he couldn't find it.
Our baby was diagnosed with bladder exstrophy, an abdominal wall defect in which the bladder is on the outside and is inside out.
As first time parents, we were devastated. How could this happen? There was a lot of information on the internet, but which information was accurate? How were we going to fix our baby? I began sinking into despair.
Caring people at Children's
One Friday night when I got home from work, there was a message from Rosemary Grant, RN, from Boston Children's Hospital, on our answering machine. I was happy to be hearing from the people that were going to help our baby, but it was a long weekend and I figured I probably be able to get ahold of anyone or hear back from them until the following Tuesday.
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!
A staff that is there for you
Finding out about the bladder exstrophy prenatally, while extremely difficult, gave us the opportunity to learn as much as we could about our baby's condition and make preparations for everything ahead of time. We were able to meet Dr. Retik and Rosemary Grant, RN, in person to discuss bladder exstrophy and we were given the phone number of Dr. Joseph Borer, the surgeon at Children's who would perform the surgery.
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.
The Department of Urology coordinated with my obstetrician at Brigham and Women's Hospital to have my labor induced so the eight hour surgery could be planned ahead of time.
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.
After the surgery, Joey "hung out" in traction on 8 West for three weeks and then, finally we were able to bring our baby home to share our lives together.
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.
Our blessed lives now
Now we bring our son to Children's for procedures, diagnostic testing and for Support Group meetings. Thanks to all the fun Joey has at the meetings, he doesn't associate Children's just with scary times, but with good times as well.
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