"It is folly for a man to pray to the gods for that which he has the power to obtain by himself." Epicurus, Greek philosopher
We used to call David “God’s Little Miracle” because he was so tiny (744 grams/ 1 lb 8 oz) and had so many problems at birth. Then a friend read his story and proclaimed that David was actually a “gift from God” who served to remind us that “He is still in the healing business”, and that my husband and I were the actual miracle. In this friend’s reality, the “miracle” was that his father and I refused to be stopped by conventional wisdom and instead successfully sought out alternatives to learning how to live with a disabled child. It hasn’t always been easy and as strong as I pretend to be, there were times when I wanted to scream.
THIS JUST SUCKS!
LIFE IS SO UNFAIR.
HE DOESN’T DESERVE THIS.
There were times I was so afraid I thought I was paralyzed, when I couldn’t breathe, couldn’t think, didn’t want to move. The best words of encouragement ever spoken to me were by a doctor whose diagnosis with whom I disagreed. She wanted to perform a hysterectomy on me because four months after I had given birth, she still couldn’t stop the bleeding. I wanted to hold onto my uterus because despite two unsuccessful pregnancies and one very premature baby, I still believed that I would carry a baby to term. She spoke to me in very clear words and said, “If you don’t have this operation, you will die. David needs a mother.”
“You will die.”
It doesn’t get any clearer than that. I agreed with her that David needed a mother, so I had the operation. Up until she made it a matter of life or death, I felt in control. Once it became a matter of life or death, all I cared about was living.
During the David’s first 108-days in the hospital we had many reasons to question his doctors. Our son was and remains one of the smallest babies ever to be born and survive in Orange County, California. The doctors who worked with him for the most part had zero experience working with babies that small. When he had his first medical procedure, the patent ductus, he was only 1 pound 4 ounces (678 grams). Although the hospital assured me that it was quite the routine medical procedure, I did not accept that a medical procedure which required touching both the lungs and the heart was routine, especially not on someone so tiny. I interviewed the entire surgical team. Notice I said "team". They work in teams, so it's important for you to know who is on the team. My first question to the attending surgeon was where he went to medical school, to which he took offense. I grilled every surgeon about their education, their grades, their internships and their general qualifications to perform this surgery on my 678-gram son. The attending cardiologist almost had me with his impressive credentials and experience until I asked him, “And how many 1-pound babies have you done this surgery on?” He admitted that he had only worked on adults, so I decided to help him keep his streak going and had my son transferred to a hospital that specializes in sick children. [I later had him transferred back for recovery, but that is a different story for another day.]
Not all doctors are created equal. They all go through similar medical training, complete an internship and a residency, but when it comes to their practice, remember, it’s PRACTICE. When it’s your life or the life of someone you love, you have every right to demand the best available care.
I prefer to believe that all parents would have made similar choices and obtained similar outcomes if they had someone show them how. THIS IS ME TELLING YOU HOW!!! During the past twelve years I have discovered that there are dozens of wrong ways that you can challenge your doctor’s medical opinion. No matter how much you disagree with your doctor’s expert advice it is still up to you to find the right way to question your doctor’s opinion and maintain a healthy relationship.
STEP 1: As Stephen Covey says, “Begin with the end in mind.” Your goal is to find the best specific treatment for your particular ailment. Remove all emotion and remember that your only allegiance is to healing. Nothing else matters.
STEP 2: There is no substitute for PLEASING CONDUCT. You really do catch more flies with sugar than vinegar, so while it is acceptable to disagree with your doctor’s medical opinion, there is no need to become disagreeable.
STEP 3: Question the advice, but not the competency of the doctor. Doctors are scientists and therefore trained to seek out knowledge. They routinely discuss medical problems with their colleagues, so chances are they may know and respect someone who is familiar with your ailment. Discuss your specific concerns about the treatment (benefits and side effects), costs, and your comfort level with the doctor.
STEP 4: Be firm, and follow-up. If you say you are going to seek out a second opinion, DO IT. Keep your doctor in the loop and discuss the second opinion with your doctor. They may have specific knowledge about whether or not the second proposed solution will work for you.
Remember: It’s all about healing you or your loved one. Nothing else matters.