Russell survived that night and the following 6 months in hospital. The one thing that sticks in my mind is why we took Russell to the Emergency Room on that day. There was nothing that was going on with him that was alarming or even profound. As many times as we tell this story the only way we could have described Russell's health that evening was that he was a "little off." So why did we take him to the hospital? The reason likely goes back to the day we got his diagnosis of his heart condition only two months earlier. Literally we had the "fear of God" placed into us on that day and believe me; that conversation has stuck with us to this day.
Perhaps this is why on the morning that we attended the Pediatric Cardiology clinic we may have had a bit of a cavalier attitude to the whole process. I remember going through the whole routine. height, weight, etc. Then we had the echo. Again, a process that we were familiar with. Then we were ushered into one of the clinic rooms to wait for our cardiologist.
This is where our visit departed from the norm. Our doctor came in and started asking the usual questions. I don't remember the specifics but I remember him explaining that he saw "something" on the echo. He started talking to us about a version of cardiomyopathy that we had never heard of..."Non-compaction." We were confused, this was not what Susan had...this didn't seem to make sense and the Doctor himself didn't seem sure of what he saw. The next phase of the discussion was unlike anything I have ever encountered. The Doctor suggested that we do a second echo and have one of his colleagues take a look. This was strange and a whole lot unnerving. The sense of panic was starting to creep in. We did the echo and had a second cardiologist look at Russell's heart. He confirmed the "Non-Compaction" diagnosis. We were stunned.
The next part of our conversation with our cardiologist was not pleasant. He started explaining what non-compaction was. He started discussing the condition and prescribed some medications. The gravity of the situation was starting to sink in. This was serious. The Doctor went on about what this condition could mean and what they can do about it. In that conversation many hopes and dreams for our 3 week old son started to come to a screeching halt. The Doctor went on, he pushed until he got a reaction. When Susan started to well up with tears he stopped. At that point he knew we understood. Some may call it "cruel" or even "mean" but he pushed us until we understood the seriousness of what we were dealing with. We walked out of that clinic appointment feeling like we had been hit by a bus. This would NOT have been a good time to do a patient satisfaction survey.
We walked out of that appointment with a fist full of prescriptions and a date to come to be admitted to the hospital in the next week or so to start Russell on Captopril. If that went well, we would then be booked for another stay at the hospital to start Russell on Carvedilol. Our life as we knew it had ended but we weren't ready to accept that yet.
The next month and a half went by without event. Our two stays in hospital in September of 2008 were uneventful and actually boring. Russell, on the other hand, was doing great. He was eating, and gaining weight and doing all the things a normal baby would do. We were beginning to think that the dire warnings that we had received were unwarranted and that our Doctors had scared the life out of us for no reason. After all our son looked absolutely perfect.
Then October 2nd came. Russell stopped eating. This was unusual. He had trouble keeping food down the night before and now we couldn't interest him in any food at all. Susan observed that his colour didn't seem right either. Nothing profound but still he didn't seem himself.
We paged Cardiology. We got a Doctor on the phone who had actually seen Russell in clinic and was familiar with him. He assured us we weren't crazy and he suggested to bring Russell into Children;s Emerg and have the ER docs check him out. In his words "if it was just a kid thing; they would send us home in a few hours" and it would be no big deal. It turned out to be a VERY big deal.
We arrived at Children's Emerg late in the evening on Oct 2nd. We felt silly being there as Russell's demeanour and his colour had improved. It was in Emergency only a few hours later when Russell went into cardiogenic shock and touched off a night of him being in the resuscitation room clinging to life.
Thinking about that night 8 years later we are still so thankful for the Doctors who scared us enough to take even very subtle symptoms seriously. The message in which they were delivered you could describe as harsh but it was the right information at the right time and that is what matters. Our Doctors also did something else. They showed us their humility and openness. We had one cardiologist who put his ego aside and let a colleague examine our son to confirm his diagnosis. I am sure this happens in other situations but these Doctors went through this process with us in the room and with our full knowledge. There actions conveyed a message that they didn't have all the answers and that honesty was refreshing. We received a message loud and clear that these people were being open and honest and that was how we were going to establish this relationship. In subsequent visits, we were shown emails from other specialists at other hospitals. Doctors with who we were consulting with and seeking out the best information on this rare condition.
It was this openness and the willingness of our Doctors to deal with difficult issues that lead us to page cardiology, on the evening of October 2nd. We felt comfortable doing it. We didn't feel like we were using up valuable health care resources. The reality was that we could have easily have said to ourselves..."let's sleep on it and see what Russell is like in the morning." If we had rationalised in such a way; Russell would never have seen the next morning. If there had been any barrier for us in contacting our Doctor, chances are, we wouldn't have. That is why access to health care is so critically important.
This is why I am so frustrated by our health care system. There are so many road blocks that exist for patients to access the system. This goes far beyond wait times and structural barriers. Many patients are made to feel that they are inconveniencing the system when they seek help for "small" issues. There are whole campaigns, in health care, that are dedicated to forcing the patient to self evaluate and "choose wisely" before seeking care. The general public should NOT be asked to self-diagnose. That's bad medicine. That is a subtle form of health care rationing and it is unacceptable.
Because of the openness we have with Russell's doctors we routinely ask questions via phone and email. It is this level of access that has eliminated the need for many clinic visits and emergency room visits. Access to accurate information and knowledgeable people is the most efficient way of managing health care and it puts the interest of the patient first. Putting "patients first" or being "patient centred" seems to be a catch phrase nowadays, which is unfortunate because putting patients first is how the health care system needs to be re-organized. It is not about making the public feel good it is about saving people's lives by listening and acting in collaboration with the patient.
My son's needs were put first 8 years ago. Our Doctors put "his" needs first; even ahead of the hurt feelings of his parents. Putting him first saved his life. Sometimes we need to be forced to face harsh reality. That process can be difficult and hurtful...but it is so necessary.
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