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
A few weeks later, I noticed Matthew was not himself. He would nurse, but he was not very active. He wasn’t the happy baby he once was. His diapers weren’t as wet and he seemed miserable. The doctors said he looked healthy and suggested I was overly tired and needed more rest. I called Molly’s urologist and explained my concerns. He said to go to the hospital and don’t leave until you get your answers. That is exactly what I did. on 7/12/2011, My father watched my older two kids and my mother went to the hospital with me. My husband worked nights so we left him home sleeping while we went off searching for what could be wrong with our baby. My biggest fear at that time was Matthew maybe experiencing a kidney stone.
Once at the very crowded doctors office, the doctor looked Matthew over and said he appeared to look fine. He ordered labs and urine tests. We really struggled getting labs and ended up collecting most of the blood through a heal stick. We tried to get a catheter for urine but the nurse was alarmed when his bladder was “completely empty” and asked for the doctor to return. The doctor said the labs would need to be done again and he was going to send us to the emergency room where they had better luck getting a line in. He said the first tests came back and it had to be an error because there is no way they could possibly be accurate. Matthew looked too good to be as sick as the tests were showing.
As we were heading to the Emergency Room I couldn’t stop crying. I knew my son was sicker than we all suspected and I felt so guilty. I should have known. I should have done more. I called my husband and woke him up. We had been in the hospital for several hours at this point and I needed him there. When the nurse working in the emergency room is struggling to hold back tears as she follows the doctor into the room, you know you are in for some difficult news. The doctor said, “The tests confirm our fears. Matthew is at end stage renal failure. He is too sick for us to take care of here. You will need to be transported by ambulance to a UCSF Children’s hospital in San Francisco.”