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
By the time Molly reached 2nd grade, she had her 3rd series of surgeries for kidney stones. During one of her ultrasound exams, they checked her bladder when it was full of urine and they could see what looked like “snow in a snow globe” After she voided her bladder and came back in, the technician asked if she passed any stones. Molly said she didn’t think so. We were told those “particles” we saw were no longer present and they thought it was probably all the particle that make up the kidney stones were being flushed out. If those particles were to stay in her kidneys, they would most likely form stones. We were not sure if this information was accurate or not, but it gave us a better visual idea of how important it was to keep Molly drinking fluids to flush out her kidneys.
Molly was also able to pass stones on her own. It was such a helpless feeling watching her in such excruciating pain and not being able to do much for her. She was so little, but she was so strong. Sitting in warm baths or taking hot showers brought her the most comfort. Molly was very close with her brother Patrick who was 2 years younger than her. During the times she would pass kidney stones or be recovering from surgeries, Patrick would often serve as a nurse to Molly. I would find him sitting next to her bed on the floor and reading stories to Molly or holding the portable DVD player so they could watch movies together. His presence really helped her deal with the pain. He would often run to get us if she was in pain, but he would also bring her snacks and water whenever she needed it.
Patrick’s kindergarten teacher told me he would often get really quiet and sometimes cry in class when she was home in pain or having surgery. He told his teacher he feels sad because she hurts and we can’t help her. We were very fortunate to have some pretty amazing teachers help not just our daughter as she struggled through health challenges, but our son too. Even though Patrick didn’t have this disease, he suffered from what it did to his sister. Feeling helpless didn’t stop with us as her parents, it effected the entire family.
This was also the year that I found out I was pregnant with our 3rd child. During the pregnancy, we were able to have an amniocentesis test done. We asked if they would check to see if our child had the same genetic disease as our daughter. We discovered that our baby was a boy and he did have the same gene mutation as our daughter. Our baby was diagnosed with Primary Hyperoxaluria Type 1, five months before he was born.
I remember being so scared to have another child with this disease. The nurse who called to talk to me asked how I wanted to continue my pregnancy. There was never a doubt in my mind that we were going to have this baby, no matter what he was diagnosed with. We focused on the fact that we knew what the disease was and that he would be monitored closely. We would continue to try and learn as much as we could to prepare ourselves for another child with PH. We assumed he would probably present the same way Molly did.
We were planning our baby shower for our son Matthew in January 2011. Molly needed to have another surgery to remove some large kidney stones a few days prior to the baby shower. Her surgeon said he thought putting Molly under general anesthesia just to pull her stent was not necessary. He asked how we would feel about pulling it ourselves at home. He gave us specific instructions and described what to do. My father had done it when he had surgery and he said it was not difficult so we agreed to give it a try.
The string attached to the stent was taped to the inside of Molly’s thigh. When the day came that she was to have the stent removed, her daddy and I were ready. It took quite some time to ease Molly’s fears. She had already been through so much, her anticipation was at an all time high. We were able to pull the stent with little pain but we did not expect something that long to come out. Once Molly realized she didn’t have to go back to the doctor and be put under, she agreed this was an easier process. My husband and I both prayed we would never have to do this with the baby.