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“BE” is BEautiful: Lila’s Story

lilamain On February 27th, 2014, our world turned upside down. We were living in Dallas and I was 22 weeks pregnant with our second child. I had been enjoying a healthy and relatively uneventful pregnancy. The biggest difference from my first pregnancy, which produced a beautiful baby boy—William, now 4— was that this time we did not want to determine the baby's gender in advance. We wanted to save that news and enjoy the surprise on the big day. We got a surprise, alright, just not in the way we ever intended. At our 22 week checkup, my sonographer went through the normal checklist and captured images of our baby's growing organs and extremities. Everything appeared as it should be except that our baby's bladder was nowhere to be found. The technician didn't seem initially concerned and explained that this happens and probably just meant that our baby had recently emptied its bladder. Over the next six hours, the technician and my OB-GYN made several more attempts to capture the organ onscreen, but our baby’s bladder still failed to appear. We asked what it might mean if there was NO bladder and were told that a baby cannot survive outside the womb without one. Our doctor also said that based on the other sonogram findings, functioning kidneys, proper fluid levels, this was likely not the case. She recommended I see a perinatologist to further investigate what was going on with our baby and said she'd set the appointment for that week. Before we left, I squeezed Jeff's hand and asked if we could find out our baby's gender. After many weeks of feeling the tiny flutters and kicks of our little one, we were already so bonded and I wanted to know exactly who to pray for. We were having a girl. In the week that followed, we learned that our beautiful baby, Lila Rebecca, had an extremely rare congenital defect called bladder exstrophy, or BE. This condition occurs when a baby’s bladder wall is improperly formed and is exposed outside the body. It only affects an estimated 1/40,000 births and would require immediate surgery. Our doctor told us not to research BE on the Internet, because the images and information we might find could be disturbing and not indicative of Lila Rebecca’s exact defect. I am the daughter of a librarian and by nature, a researcher, so I began researching doctors. My brother-in-law is the Director of Surgical Services at Texas Children’s and reached out to us immediately. He was not excited to learn about our baby’s complication, but was very excited to inform us that one of the nation’s foremost experts on bladder exstrophy repair, Dr. Patricio Gargollo, had just been recruited from Dallas to Houston to join the urology team and head up complicated surgeries at Texas Children's Hospital. I was already familiar with Dr. Gargollo from my initial research and had him on my short list of surgeons to interview. Within a day, I had a personal email and cellphone number for “Dr. G.” Yes, I said CELLPHONE number. We had several introductory conversations and were able to meet with him in Dallas on his last day at his former hospital. Dr. G could not have been kinder or more knowledgeable.lila2 His bedside manner was impeccable and he was able to answer all 47,000 of my questions about our baby girl’s condition and impending surgery. He informed us that a typical bladder exstrophy repair requires a three-pronged approach. First, the bladder and genitalia need to be reshaped. Next, pubic bones need to be split so the bladder can be placed back inside the body. Finally, the pubic bones need to be fused together and held in place by a temporary body cast. Dr. G would be collaborating with Dr. William Phillips, the Chief of Orthopedics at Texas Children's. Together, we formulated a plan and it was determined that I would deliver at our local hospital and we would drive down to Houston for surgery when Lila was four days old. As frightening as this sounds, Jeff and I felt surety that God’s plan is perfect and that he had hand-delivered us the best doctors in the world for our baby girl. Lila Rebecca was born at 2:15pm on June 20, 2014. She weighed 5 pounds, 15 ounces and was perfect in every way, with the one exception of her exposed bladder. From the moment we arrived at Texas Children's Hospital, Jeff and I were impressed by the constant stream of communication between the doctors, nurses, hospital staff and us. For the duration of her surgery—from 8:30 am to 5:30 pm—Jeff and I received texts and in person updates from the surgical teams and hospital administrators. Though we were scared, we were at peace, because we were so confident in the level of care our precious daughter was receiving. The surgery was an absolute success and Lila came out of it beautifully. She spent 12 days recovering in the Level IV NICU and Jeff and I were housed nightly in the onsite Ronald McDonald House. I was able to walk down a hallway to nurse her at 2 am, which was such a blessing, and every day we were able to grab a snack and catch a few hours of much-needed rest within the welcoming walls of the Ronald McDonald House, just a few hundred feet away from where our baby was sleeping. Even though there are wonderful doctors and hospitals in Dallas, we have chosen to continue to travel to Houston for Lila’s follow-ups and future appointments. There are no healing hands that we trust more than Dr. Gargollo’s and the team at Texas Children’s. Bladder exstrophy patients frequently have a long road of future surgeries in order to achieve urinary continence and we intend to have every single one at Texas Children's. Lila recently celebrated her 10 month birthday by captaining a team in the March of Dimes’ annual March for Babies. She and her team, BE Supergirls, raised more than $2,500 to help babies with medical conditions and increase awareness for bladder exstrophy. Thank you, Dr. Gargollo, Dr. Phillips and the incredible staff at Texas Children’s for giving us this precious gift, our “BE”autiful little angel. She is tiny, but she is mighty and there is nothing that she cannot accomplish!
Jordan Wonsmos, Mother Of Patient