Maureen McKinstra

First post: Jan 25, 2022 Latest post: Aug 3, 2022
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Maureen's story began over ten years ago, on September 20, 2011. Approximately 12 hours after she was born, she was flown (in the care of a transport team) from Omaha to Children's Mercy in Kansas City.


To learn more about Bladder Exstrophy, you can find more information at the Association for Bladder Exstrophy site: https://www.bladderexstrophy.com


Every child's story is unique, of course. In Maureen's case, throughout my pregnancy with her, all seemed to be going well. There was no indication of any complication. She was delivered by C-section. It was upon delivery that the nurses and doctors realized that her bladder was partially outside of her body. A urologist was called in for consultation. He identified the condition and said that she would need surgery within 24-48 hours, and that there was not a specialist in Omaha who could treat her. We had a choice of going to either Kansas City or to the Mayo Clinic (in Rochester). As it turned out, the team from Kansas City was ready to take her that same night. So, we agreed to have her treated in Kansas City. That same evening the transport team flew in to Omaha and Maureen was transported that night to Kansas City. We were thankful for the ready availability of quality care for her. 


My husband drove to Kansas City the following day. I recovered in hospital for a day, and then my sister (thank you, Sheila) drove me to Kansas City. Maureen was born with otherwise normal health: 7.5 lbs, all good vitals signs and so forth. She did need to be in the NICU for a month or so, though, as she needed to gain extra weight and nutrition as she underwent some early testing and the initial procedures. 


For the first year of her life, some of her bones needed to develop more fully (as is normal in cases of Bladder Exstrophy) before her bladder could be successfully put back inside of her body. So, during all of these early weeks and months, her bladder was actually still outside of her body--even through her first birthday.  Between ages 1-2, after making sure that the bladder itself was in stable condition, Dr. Gatti was able to successfully complete those first couple of stages of repair so that the bladder would remain enclosed within the abdominal wall. 


She also had hip dysplasia, so she had her legs in a SPICA cast for 6 weeks as her bones were healing and hips were aligned. (Hip dysplasia seems to be common with Bladder Exstrophy patients.) She had learned to walk by age 1 and it was closer to age 2 when she needed to wear the SPICA cast. So, during those weeks in the SPICA cast (which basically binds her legs together) she could not walk. Once out of the cast, she was back to normal walking. 


By age 2 1/2 she was in a stable condition, having recovered from the initial surgeries. I had been staying home with her full-time during the days. By the time she was 2 1/2 it seemed that she would benefit from some kind of pre-Kindergarten days by being with other kids. So, she was enrolled in toddler-preschool at Creighton University's Childcare Center. At that time was also when I began working full-time during the days. 


Maureen thrived in early childcare and has grown and developed well over her early grade school years. 

Over the years, we have travelled to Kansas City at least once per year for a check-up. Thankfully, Maureen has not experienced many problems with Urinary Tract Infections. This fact also allowed for a little more flexibility in terms of deciding when this next surgery should be done. It became clearer over the past couple of years, that this year--at age 10--seems like the best time for her to be given a stoma and to start using a catheter. The doctor will need to first strengthen and make her bladder larger (by adding tissue). The bladder will be closed off from the lower area (where it is currently voiding from) and, instead, the bladder will be drained through a stoma in her belly button. This will allow her bladder to function, as much as possible, in the way that the bladder would naturally function. This surgery will also give her greater protection against possible UTI (protecting her kidneys) as she grows older. 





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