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 world was spinning, I struggled understanding the words I was hearing. I hugged my baby tight and could not believe my ears. End Stage Renal Failure sounded so final. It was the scariest thing I had ever heard. How could I have missed this? How could I know something was wrong, but let it go this far? The doctor told us that an ambulance was coming from San Francisco to pick us up and we would just wait there in the emergency room until it arrived.
Matthew’s creatinine level (test to show kidney function) was extremely high at 9.62 (normal was .20-.40) and his sodium level was extremely low at 108 (normal range is 133-145). Most of his other labs were off quite a bit also. The emergency room doctor said he had never seen a patient that young with levels that severe.
I called my family to let them know what we were facing. Other patience and their families overheard our conversation and offered hugs and prayers. I told my mother that I was scared and I needed to have Matthew baptized. He was supposed to get baptized the following month but we couldn’t wait. My mother in law called our family priest and he rushed down to give our son a blessing. We huddled around our baby boy in the emergency room and with Matthew’s Godmother on speaker phone and my father in law standing if for the Godfather, we witnessed a beautiful but very rushed ceremony over the emergency room sink.
When the ambulance arrived to take us to UCSF, there were two paramedics, a pediatric nurse and a doctor on board. Before loading up, my priest (Father Robert) puled me aside and told me something that I will never forget and have often reflected on. He said our strength and faith would be tested and not to give into the fear. He reminded me to hold tight to my faith and know that God was always with us. Our family was surrounded by many who love and support us and they would all keep us in their prayers. As we walked out of the emergency room, we saw hospital personnel and patients with their families lining the hallways silently watching us pass. Their faces were so solemn and some even cried. Matthew could barely be seen on the gurney, surrounded by medical equipment and escorted by a team of medical professionals who now were in charge of his care.
I loaded up in the ambulance with our baby boy and we headed to UCSF. My husband and mom went home to grab some items and they met us at the hospital. The entire drive (about 2 hours) was mostly in silence. My mind was racing but I was afraid to ask questions because I worried about what the answers would be. Somehow, I felt if I didn’t ask what was happening, maybe it wouldn’t be as bad as it seemed. Finally, as we pulled into the hospital ambulance entrance I built up the courage to ask the doctor if my son was going to make it through the night. She put her hand on mine and said, “Absolutely. Without a doubt. This is where sick kids from all over come to get better. We got this.” For the first time all day I felt hope.