Four years ago, I heard Dr. Bruce Cohen, Director of Pediatric Neurology at Akron Children’s Hospital, talk at Wheatridge Recreational Center. We had spent the whole day at The Children’s Hospital for an eye procedure for Jacob, so going away in the evening was not high on my list. At that time, there was also “only” a suspicion that Jacob had a mitochondrial disorder despite skin and muscle biopsy results.
I came away from that evening knowing that Jacob had a mitochondrial disorder – proof or no proof. I just knew. I just knew as only a mother knows. I have always been able to trust my gut feeling. This time, it was not a good feeling. My stomach was a knot, and I had to take big breaths as reality sank in. I remember overeating dry vegetables in a fatty ranch dressing as Dr. Bruce Cohen confirmed one after one after one of Jacob’s symptoms and pieces to Jacob’s medical puzzle.
I remember Jacob’s metabolic doctor being in the room, and right there in the conference room of the Wheatridge Rec Center, Jacob was put on a mitochondrial cocktail of Coenzyme Q10, Levocarnitine, and Riboflavin. After Dr. Bruce Cohen had heard Jacob’s story, he told Jacob’s metabolic doctor that it should happen right away – confirmed or no confirmed diagnosis.
What I remember very clearly from that evening is Dr. Cohen’s answer to two large questions: “ How long will my child live?” and “How is a Mito kid different”? I remember Dr. Bruce Cohen saying that he can’t predict the life length of our kids, but the thing to look out for are the medical crashes Mito kids have. Crashes that will involve major organs. Crashes that will mean loss of skills. Crashes that will mean set backs. Crashes that will take lives. The more major organs involved in the crash, the worse the odds are for survival.
Dr. Bruce Cohen gave the example of this little kid who had made major progress, and then was hit by pneumonia. The pneumonia took this kid’s life. Dr. Cohen didn’t expect it, but the crash involved this kid’s lungs and brain (seizures).
I remember sitting in the smelly bathroom of the pediatric intensive care unit in the middle of the night after Jacob had had his first medical crash. And I heard Dr. Cohen’s words in my head as if we were sharing the toilet seat together, and the cry came, not a pretty cry, a hysterical cry – because I know this was for real. I had seen the true, ugly side of mitochondrial disease.
The way Mito kids can crash is what differentiate Jacob and his Mito buddies from many other special needs’ children. I don’t know many kids who need to have 911 on their speed dial. I don’t know many kids that without absolutely no warning go into seizures, blood pressure drops within minutes, sepsis is declared. Jacob has survived 2 (!) medical crashes in his life where we didn’t know if he would live or die.
You can never prepare yourself for a medical crash. As you’re watching your child fighting for his life, and not knowing if he will make it or not, the rest of your life feels surreal. What you did earlier that day feels like another life time. You can only stay in the moment.
My advice to parents of Mito kids is to take each illness of a Mito kid seriously, and always make sure your child is checked out by his primary care physician or the ER doctor after hours. Just to make sure your Mito kiddo is safe. We know Jacob survived both his medical crashes due to already being at The Children’s Hospital at the time of each crash. There was still time to act. There was still time to intubate when Jacob couldn’t breathe on his own.
Having said that, there will never be enough time to prepare yourself mentally for a medical crash, but it is important that we all know how our Mito kids are different.
You can also check out today's post on Miracles for Mito's website: