Here's the second post in our "How Do You Handle Bad News from the Doctor?" series.
As parents of children with complex medical issues, we are no strangers to receiving bad news from doctors. Although we've never been dealt what I would consider devastating news, we have certainly received our share of difficult reports and diagnoses. I still remember what the geneticist told my husband and I twelve years ago just days after Peter's birth. He said, "This is not doom and gloom, but this is a very difficult road." He was most certainly a very wise doctor!
The first life-shattering report we received came from the maternal-fetal specialist at my 20-week ultrasound. That is when we were told that our baby had at least two significant birth defects related to his kidney and jaw. The doctor's exact words were, "Where there is smoke, there is fire. You may want to think about terminating your pregnancy." As you would expect, we were heartbroken and terrified. I couldn't sleep for days following the news and vividly remember sobbing alone in the middle of the night, grieving the loss of the child I had been expecting.
What got me through the remainder of the pregnancy was a focused concentration on researching syndromes with jaw and kidney abnormalities. Searching the Internet was my way of coping and preparing for the arrival of the unknown. I reached out to several listserv groups that offered very useful advice. For example, I learned a great deal about micrognathia (small jaw) and found that children with the condition often require tracheotomies to help them breathe. Before Peter was even born, I was ready for the possibility that he may need a trach.
More importantly, I had quick and immediate access to a group of experienced parents that taught me how to care for him, knew what questions I needed to ask doctors, and gave me advice on how to deal with all the other baggage (insurance, therapy, medical equipment, and so on) that consumed our lives for several years. To this day, I credit the support and knowledge received from these parents for helping our family survive the first years of Peter's care. Although I've only met a few of the listserv members, I will forever be grateful to all of them for their encouragement and support.
You never forget where you were, what you were doing, and who you were with when you receive bad news from a doctor. It's so traumatic that it's forever etched in your memories. I can recall a doctor telling me that Peter would never chew food or even swallow water. She told me this with absolute certainty, even though he was only six months old at the time. What I remember from that appointment is leaving the hospital in tears of grief that eventually became tears of anger before I finished the one-hour drive home. How dare she deliver such an absolute diagnosis before Peter even had a chance to try?! From that point on, I became suspicious of any specialist that thought they possessed a crystal ball. Once you have enough experience, you come to realize that medicine is, indeed, a practice. The only real absolute is that there is none.
More recently, we encountered a doctor who told us with ridiculous certainty how Peter's life will unfold. She emphasized all the things she believed him to be incapable of doing while providing almost no positives. She was disrespectful to both Peter and us as his parents. I was once again heart broken and grieving the visions I had of Peter's life. Why, after so much experience, I chose to "buy into" what this doctor was selling is beyond me. After getting my emotions back in check, I once again sought the solace of research and information. I met with other specialists and received several other opinions. They were all in conflict and disagreement with the initial report. Having these other opinions reassures me that I'm not running from the problem or in denial. It also means that we are not making life-altering decisions for Peter based on the recommendation of one so-called expert.
Medicine is called a practice for a reason; it's full of uncertainties. As parents to these medically fragile children, the ultimate decisions regarding their care lies on our shoulders. It is a huge responsibility, but we have tools that no expert will ever acquire. We know our child better than anyone else, and we love our child more than anyone else. Although it may sound insignificant when compared to a seasoned doctor's opinion, I have found it to be a reliable and trustworthy guide.