OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet
My name is Kristi Ouimet and I have 2 children with Primary Hyperoxaluria Type 1. My husband (Kelly Ouimet) and I have 3 children together, Molly (age 13), Patrick (age 10 1/2) and Matthew (age 5). Our journey with PH1 began years ago and has had many bumps, twists and turns.
In the beginning, our family was as normal as any others with no significant medical issues. One day when Molly was 3 years old, she started complaining of significant side pain so we took her to the doctor and it was dismissed as a cramp or possibly a growing pain. We went home and the pain intensified. At times, Molly would scream in pain and writhe around, unable to find any comfort. There would be moments of relief when she would run around and play as if nothing had happened, then the pain would hit again. We took our son Patrick (18 months old at the time) to my parents house on our way back to the doctor with Molly. My mother kept Patrick and my father volunteered to go to the doctor with us.
The doctor was stumped and didn’t know why she was having such significant pain. My father said she was acting like he felt when he had kidney stones and wondered if it was possible she had a kidney stone. The doctor said it was highly doubtful and more likely she had a blocked bowel or intestinal issue. A blocked intestine was scary news to us because my father had an older brother who passed away due to some type of blockage when he was 3 years old. We went home again with no confirmed answers, but another appointment the next day with a pediatrician.
Molly was throwing up and in such intense pain that we went to the emergency room several cities away. We waited hours to be seen. The doctors gave Molly an IV to hydrate her and confirmed through X-ray and ultrasound that she did indeed have 3 kidney stones. Two stones were in her kidney and one stone measuring 7mm was trapped in her urethra. After 13 hours at the hospital the pain subsided so they discharged us and said someone should be contacting us for follow up. They were not sure what type of treatment they would be able to do on a child that small. One doctor told me that they just don’t get cases like this and he wasn’t sure surgery could be an option because they don’t make instruments this small. They told me to keep Molly hydrated and bring her back if her pain intensified.
Over the next few days she had pain, but not as intense to bring us back to the ER. We were sent to a nephrologist and had a consult with a pediatric urologist who said he would be surgically placing two stents into Molly’s ureter and removing the stones that could not pass. These surgeries took place a few weeks apart to let her body heal. 1st surgery was removal of stone in urethra and place stents in both ureters. 2nd surgery was to remove stones in both kidneys and leave stents in place. 3rd surgery was removal of both stents.
We did not know why Molly had kidney stones and did not know if she would have more. Her doctors set up follow up visits and tests, but we did not have any answers. It would be 2 more years before we would get the diagnosis of PH1.