Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children’s.

Our adoption journey began in late 2016, little did we know that our daughter was just being born in China. On June 16th 2018, we received a call from our adoption specialist who had found our daughter; we were told she had a complex urogenital condition called Bladder Exstrophy. We were overwhelmed by fear and uncertainty for her future as we had never even heard of this condition. However, we knew this was our daughter and nothing was going to stop us from bringing her home.

Research, Guidance & Support

Through the guidance of our pediatrician, our local urologist, an amazing family support group on Facebook, and the Association for Bladder Exstrophy Community, we spent the next three months learning all we could about our daughter’s condition. Our daughter had already had one failed closure and from our research we knew that finding an experienced team was necessary for a successful second closure and for her future. We were able to connect with Dr. Merguerian at Seattle Children’s Hospital with the support of our local urologist and with the information provided by A-BE-C on centers of excellence. Dr. Merguerian provided a sense of calm and hope for our daughter’s future. Out of his personal time he called us, reviewed our daughter’s file and coordinated with our local urologist preparing for our daughter’s surgery.

Team Comes Together for Closure Surgery

After eight months home we traveled from Tennessee to Seattle, WA, to work with the Seattle Children’s team for our daughter’s second closure. We had two weeks of pre-op appointments meeting with orthopedics and urology. The entire team worked seamlessly together, answering all of our questions and easing our concerns. The team was amazing on the day of her surgery, doing their very best to put our daughter’s anxiety (and ours) at ease, making balloon animals from gloves and talking us through the procedure. Our daughter’s surgery was particularly difficult due to medical history, but after 11 hours in the operating room our daughter had her successful second closure. The team spent time after a long day to discuss the surgery and what the outcomes mean for our daughter’s future. The Seattle Children’s anesthesiologist team stayed with us after the surgery. The two weeks post-op were difficult, but the entire Seattle Children’s team was an amazing support and took such good care of our daughter. Dr. Merguerian and his team not only ensured our daughter was supported medically, but was deeply cognizant and concerned for our own mental and physical well-being.

Hope for the Future

Initially it seemed the task before us, caring for this beautiful little girl with a complex condition, was insurmountable. However, the A-BE-C community, the online family community and the Seattle Children’s team were vital in our journey. We are now a year post-op and our three-and-a-half-year-old daughter is full of energy and more personality than we know how to handle. We are eternally grateful to the Seattle Children’s team and to all the families who have supported us.

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