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
Our son Matthew was born via scheduled C Section on February 11, 2011. Everything seemed to be going well and there was nothing unusual about his first few weeks. When he was 28 days old, his nephrologist ordered an ultrasound to check his kidneys so we could have a baseline of his health. Doing an ultrasound on a newborn is not the easiest thing to do. Fortunately, I was able to nurse him during the procedure and other than having to hold some pretty uncomfortable positions while nursing him, we were able to get it done.
We discovered his kidneys were already “full of kidney stones” and there were too many to count. Our doctor said not to get too upset because his creatinine was still doing well and other labs were all within range. Our nephrologist said our daughter could have been the same way, but since we never had an ultrasound done on her before stones presented, we just didn’t know about it. The specialists would continue to monitor Matthew and we still were not sure what we would be in store for.
I continued to nurse Matthew and monitor his every cry and paid close attention to his urine output. When he was about 2 months old, he started projectile vomiting like his sister did when she was a baby. The doctors assured me that it was probably just reflux and that it is very common. He still wet his diapers and didn’t seem to be in any pain so there was no red flags at this point. When things didn’t get much better a month later, I insisted we check him further. His personality was not quite the same. Even at 4 months old, I felt there was something going on but I just wasnt sure what it was. His doctor agreed to order an ultrasound of his abdomen and wanted to rule out any intestinal problems.
When we had the ultrasound the technician asked us if there was a problem with the kidneys because they were not the right density. I knew he had kidney stones so I said it was just full of kidney stones and the doctor was aware of it. She said this is more than just kidney stones, there is definitely something not normal about it. In hindsight, I should have paid closer attention to what she was trying to say. I should have insisted the doctor get a full kidney work up at that time with labs.
We didn’t and that nearly cost us our sons life.