Leah was born healthy and beautiful and even though she was continuing to thrive she suffered from severe, debilitating constipation.
Leah has suffered from constipation since birth. We thought it was well managed on a HUGE daily dose of laxatives. However, at almost 4 she was still not potty-trained. Her pediatrician became concerned and sent us to meet with a urologist at our local Children’s Hospital. The doctors believed that it was behavioral, she was just not ready, and that eventually she would catch on. However, a month later Leah developed her first UTI. It wasn’t long after that she developed her first febrile UTI or kidney infection. The urologist ordered her to undergo a VCUG where they discovered that she did have a sight kidney reflux (requiring her to undergo her first surgery) and that her constipation was severe. We met with a GI doctor who prescribed even more laxatives and daily enemas. Over the course of the next year Leah would begin a whirlwind of appointments, tests, and over 50 inpatient hospital stays to treat the very resistant urinary tract infections that were making her so sick and to treat several bowel impactions. In June of 2015 Leah went into the operating room for the 5th time to have a cecostomy placed. While it has truly changed her life for the better we were still unable to keep her constipation under control. In the fall of 2015 Leah was referred to the Colorectal Center for Pelvic Reconstruction at Nationwide aka our heroes!! Leah attended the bowel management program where the greatest group of doctors and nurses that we have ever had the privilege of working with were able to keep her constipation under control. While there we also met with a wonderful team of urologists. Whom, after testing, suggested that Leah have a sacral nerve stimulator placed to help with her urinary incontinence. On March 28, Leah went back into the OR for the first phase of surgery and it has truly been nothing short of a miracle. Hopefully, within the next few weeks she will undergo the second phase of surgery to have the stimulator permanently placed.
After 8 years of diapers Leah is able to wear regular underwear, stay mostly dry, has her constipation under control, and most importantly is happy and pain free. Choosing to make the long journey to Nationwide Children’s was the best decision that I have ever made as a parent and one that I am eternally grateful for.