Maybe it wasn't my fault

With our genetics and retina appointments behind us, I thought I would feel relaxed, reassured. Today was supposed to deposit me back where I was before I found that spot in his right eye. The news was all good. The genetics doctor in Portland does not think Max has a syndrome or major chromosomal defect. Just three multifactorial congenital 'defects.' I feel like I have been waiting to exhale. So why, now that I am home and making supper, do I still feel like I can't breathe?

The pediatric retinal specialist did not think Max's eye problem would get any worse or cause him more trouble as time went on. The way his eye looked did not make him think of any subset of kids with other health problems.  The only restriction he would have is that he could not be a fighter pilot. No worries there. Everyone was so nice to him in that huge grey tower of eye and ear care. Max even seemed to enjoy the adventure - that is everything except the ultrasound of his eye, which terrified me, so I didn't blame him. When the doctor said he wanted us to take him for an ultrasound, I had flashbacks to when the cardiologist listened to Max's heart and promptly said he needed an ultrasound. What was it he saw that worried him? But Brad reassured me: They do this all the time in adults. It's no big deal. And, true, the ultrasound did not reveal any surprises.

Then this morning at genetics, bile surged into the back of my throat as the doctor measured the distance between Max's eyes. All these different distances are plotted in curves showing 'normal' and abnormal' in a grandly morose textbook called Smith's Recognizable Patterns of Human Malformations. My son was being plotted on a chart to see if he was malformed in other ways we hadn't thought of yet. Super.

But those were also fine. And my surprise turned out to be that the cardiologist referred to him in his last note as having true Tetralogy of Fallot, not just a VSD and pulmonary stenosis. Quickly, I tried to reassure myself that this term shortens the amount of words it takes to explain Max's heart to someone else. Right? Its just economy of words. But if he is using that term, does he think that something else will need to be addressed with Max's heart? He did say his aorta was "generous" but my fountain of hope was the fact that he did not have enough "defects" to fit the true label of Tetralogy of Fallot.

But what if the cardiologist was merely trying to meter out the news to us in manageable bites? What if when we go back in July he will tell us yet another new thing wrong with little Max's heart? And why was my husband so confidently agreeing that, yes, our son had Tetralogy? Had I been clinging to meaningless minute details just for my own peace of mind?

The geneticist did point out one interesting fact that I had not thought of yet. Despite what all the doctors have told me, I have never been able to shake the thought that Max's congenital injury was due to some unidentified grossly negligent lapse in my in utero protection. Somehow, I let this happen to him. Even if I didn't cause it, I didn't stop it. But the doctor today again reiterated that Max's problems were not because of anything I did. For the first time, it didn't sound entirely hollow. His lip and heart were both what we call "midline defects" which means they could have been caused by the same insult. But this eye thing, that was not a midline problem. It was just on his right side. According to her, this would just be classified as a random occurrence in no way related to his other problems.

While I still need to figure out whether my hope has rightfully evaporated or not, we now start to wait for his annual cardiology appointment in July. And just in case something goes terribly wrong and he doesn't get to fulfill his dream to drive a real fire truck, I got him one. It even squirts water from a hose.

"I know that I am breathing in..."

"If your mind wanders, gently guide it back with your breath: I know I am breathing in, I know I am breathing out...," my yoga instructor coached in class yesterday morning.

My mind was wandering. Big time.

We go to see the retina specialist in Boston tomorrow. The idea that something 'more' could be wrong with my Max has me bathed in doubt. What else have I missed? I must have looked in his ears dozens of times since he was born, never wanting to make an unnecessary trip to the pediatrician's. But I never thought to double-check anything after an appointment. I only tried to prevent unnecessary appointments. I never checked his eyes. It was the same approach I took with my girls. If any of them actually had an ear infection, I would always take them to the pediatrician. Aware that I worried a lot about my own kids, I have always figured it was better if I left their medical care to someone more objective. I have always assumed that if my fear affected my judgement, it would be a negative thing.

We have a beautiful little bookstore down the street. I love to go in and wander around, just looking at the books is soothing. A little over a month ago, I picked up a nice solid hardcover labelled "a family memoir" as I browsed. When I read the cover, I realized it was a book about a boy born with congenital heart disease who dies as a teenager.

I dropped it quickly back on the shelf as if it had burned my hand and found a different book that didn't hit so close to home. But I couldn't stop thinking: "What if there is something in that book that I need to know to keep Max safe?" It haunted me for a few weeks until I came home with a copy of Immortal Bird last week.

Bravely, I read the heart-breaking story of Damon, Doron Weber's son, while watching my own play happily as Damon undoubtedly did when he was two.


So many things reminded me of us and Max. The book is about what can go wrong if you trust too much in medicine, in doctors, in the healthcare system. This is a story about why science can't always squelch that little voice in your head. This is a story about why we need to heed our fear.

This phenomenally educated family's first born child had prenatally undetected severe congenital heart disease. He had a Fontan operation which bought him many years but then developed complications and had to have a heart transplant.  His family gave him so much during his precious years on this planet, but medicine ultimately failed him despite his father's constant pursuit of perfect care for his perfect son.

Max has had a cold while I've been reading this book. I started his inhaler and gave him ibuprofen. Everyone else in the house had it already. I tried not worry, watch his breathing as I normally do and waiting for a fever over 101 for more than 3 days to call the pediatrician.

No fever, just a cough and runny nose. But my nanny's daughter has been sick a lot lately and she had a fever. She was worrying me, so I suggested our nanny bring the kids to me at the end of my day and let me check her daughter. I plopped Max and her daughter next to each other on the exam table.

"Check me too, Mama!" Max requested, not to be left out of anything.

So I did. And two glaring bright red pus filled ear drums met my gaze into his unsuspectingly cheerful ear canals.

"Do your ears hurt, Max?" I asked.

"Yes, mama. My ear hurt," he said as he put on a sad, sympathetic face and patted both his ears.

Up until that very moment, I would have always called his pediatrician in such a situation. Always. I assumed my fear would negatively affect my ability to provide medical care for those I love the most. But now my perspective has changed. I was the one who found his eye problem. Doron Weber was the one who kept his son alive for as long as he did. Trusting in medicine may have allowed Max to lose sight in one eye and not allowed Damon Weber to live all of the years he did.

I called my husband to see if he agreed with my choice and we called in a prescription for Max's antibiotic.