Part 3: The Christmas Baby
The attention and help that I received from my team of doctors after this moment became applaudable. They were amazing. Not only did they really listen to me, but they worked closely with me and respected the research and education I had gained on my own and shared with them. Because I had presented them with quality research and not simply unreliable opinions of the internet, they took my input and questions seriously. They appreciated the credible sources I used and often would ask for copies of some of the research for themselves.
I questioned and researched every single diagnostic test, treatment, medicine and suggestion my doctors made along the way. I was fully informed throughout every single step as to why they were suggested and used as a part of my care and what the planned outcome was for it. No longer did I just assume that if a doctor said it, it was something I didn’t need to think about.
As it turns out, the longer you are pregnant with this complication, the higher your risk of stillbirth. Because I was an extreme case and due to my history, their recommendation was to induce labor the moment life outside the womb was viable. That day just happened to fall on Christmas. My dear doctor had become as invested in this moment as I had.
He was hopeful and asked: “Well, I’m scheduled to work on Christmas and I don’t want to miss out on delivering you, how about a Christmas baby?” I agreed.
The condition of my liver and biliary tubes was atrocious at this point and dangerous for the baby. I needed the medical team’s special care and attention to survive not only the pregnancy but the strain of labor that nearly killed me.
At one point during labor, they announced to my family that if they believed in prayer they should do so because they were losing both me and the baby.
Because of this and the advocacy for my own health, my doctors were able to help us both survive. Despite the health scares throughout the process, eventually a beautiful baby boy let out the most precious sound I have ever heard, a newborn’s cry on Christmas.
He was quickly rushed to the neonatal intensive care unit as he was a very small preemie. But my son was alive. I am certain this would not have been the case had I stayed the docile, “good” patient. And I may very well not have been alive myself, either.
I am so grateful that my doctors recognized that my being a bad patient was actually a good thing. My doctor later confessed to me that my being a bad patient actually challenged him to be a better doctor. That’s what being a bad patient is. It is not being rude and callous towards a professional. It is not disrespecting them or assuming their ignorance. It is not throwing around threats of suing with the intent of wielding power over them. It is politely but firmly demanding the best care from them and advocating for your health.
Doctors sometimes get a bad wrap from the rare disease and chronic illness community and I think that it is not fair to them. Most of them are really good professionals who really care. They are working in a troubled system where they aren’t always given the opportunity to offer their best due to the restraints of red tape and policies. They are simply discouraged from looking for rare diseases amongst the masses of patients they see because they are, in fact, rare.
It is too time-consuming and expensive to manage, especially considering that now everyone has an opinion they formed off of the webMD symptom checker or Wikipedia that is not usually worth hearing. Could you imagine the billions of dollars and hours wasted if they considered and tested for every idea thrown out by every patient? Being a bad patient is not a tool to antagonize or make life harder for doctors. It is helping them to help you.
Do not accept the common working definition of a “bad” patient because bad patients are actually really good patients.
Good patients are involved in their own health, through wellness activities and habits, and also through knowledge and involvement in all diagnostic and treatment procedures. The real definition of a “bad” patient is one who allows themselves to get tossed around aimlessly without offering critical input, information, and feedback. Then, when things go wrong, they cry foul and place the entire blame on medical professionals.
By all means, a “good” patient holds not only medical professionals to a high standard but themselves as well.
So be a good patient.
Change doctors if needed.
Do credible research and learn all you can from credible sources.
Make sure your doctor fully understands your history.
Advocate for yourself by offering valuable insights and suggestions as they come.
Give them all of the information they need to help you.
Inform yourself about the diagnostics, procedures, and medicines suggested.
Don’t be afraid to question your doctor.
Be kind and work with them, not against them.
What I had once considered being a bad patient was actually being a good patient. It saved my life and my babies. So be a good patient, it might save your life one day too.