Given the amount of effort it can take to see a doctor for a simple checkup, the severity of a diagnosis is often made clear when the sea of referrals, answering exchanges and lunch breaks suddenly parts for an immediate appointment. As surreal as our emotions were in the wake of the discovery at the ultrasound, their reality was underscored by the chain of events that was instantly set in motion. I barely got back to my office when my cell phone rang with word that we were to meet the Pediatric Cardiologist first thing in the morning before he flew to Europe. While comforting to receive such immediate and thorough attention from a specialist, in the back of my mind I realize that speed and ease of scheduling is linked to the severity of the diagnosis.
The exam was thorough and the Dr. took great time to explain the details of Hypoplastic Left Heart Syndrome, describe treatment options and answered as many questions as we could come up with as our minds were racing. Even in his experienced and expert position, I have to imagine there’s got to be a yearning to not send away people in our position empty-handed, which explains why I have a pamphlet from the American Heart Association entitled “If Your Child has a Congenital Heart Defect”.
I hate this book. I’ll never read it. There’s so much wrong with it.
The bold type is theirs (not mine). Glad they highlighted YOUR in the title. Like any parent would ever pick this thing up if it wasn’t their kid.
I wonder why they didn’t bother to highlight the most startling word in the title—DEFECT. It’s already screaming out at me and doesn’t require any further intensification. I can’t believe they use that word to describe any child. Summoning all the objectivity I can muster, I understand that “defect” describes when things are less than they normally should be, but in how many other contexts have we hesitated to use relatively benign objective descriptions because they might carry some offensive connotation. I recently was party to a civic panel endeavoring to examine the situation of the homeless in our city, but prior to any substantive discourse there was a discussion worthy of documentation in the minutes as to whether we could use some term other than “homeless” to discuss the population at hand. Referring to someone who “does not have a home” simply as “home-less” is viewed as a pejorative, yet no one’s screaming that my son is being deemed defective.
I’m stuck at the cover. The art is really bugging me. There’s a smiling couple cuddling their toddler with the sun in their faces and the wind in their hair. Would they really be smiling like that if they knew the words “Congenital” and “Defect” were stamped across Mom’s forehead? They look nice enough. They even look happy enough. But I think they resemble people who would be on a “So your fertility treatments worked…” brochure. Maybe they were supposed to be on an Infamil pamphlet as the right mix of baby formula and nutrition could make them look that happy, but they aren’t selling me that their baby has a congenital heart defect and all they can think to do is bundle up in sweaters and walk on the beach.
I’m sure this brochure is intended to inform me, give me hope and maybe even assure me that everything’s going to be OK. If it can do the latter in 69 pages (OK, I peeked at the table of contents), I can assure you there wouldn’t be stacks of this thing there for the taking in the waiting room of a Pediatric Cardiologist’s office. In the 17 sleepless hours since first learning about this diagnosis, I’m certain the web has provided me with much more comprehensive information than could be found in the two pages this booklet devotes to Hypoplastic Left Heart Syndrome. Clicking on a web page feels like a detached activity, but there’s something about picking up a booklet like this and cracking the spine that signifies entrance and membership into a club I never wanted to join. I don’t dismiss the very real situation my child is in, but I refuse to read their handbook.
Somewhere behind this, I suspect there’s a frustrated individual with a degree in English Composition. She dreamt of changing the world and capturing people with her prose. I wonder is that dream still there, or was signing the contract to write “If Your Child Has a Congenital Heart Defect” a final indicator that she’s given up hope that people like me will ever read the stuff she really wanted to write. I feel sorry for her, because I’m not going to read this either.
Rudy's Beat 
Right on Rolf. When Miichael was 2, the doctor called his heart condition a deformity in my son’s presence. I asked my then 7 year old daughter to step out into the hall with her brother, while I stayed in the examining room with the head of this particular dept. in this very respected hospital and proceeded to verbally (as my father would say) “rip him a new body opening”. I told him with one word he could have undone all the confidence and sense of well being we had nurtured in our son. That we never regarded him as deformed, defected or whatever assinine word he chose to use. I made him apologize to my son, explain in kind terms about the heart condition which is treatable. I scared the dickens out of him and he is lucky I did not punch him out. I am a tiny little person with a sweet nature and was meek before I had my children….then the veil came off and I realized I was a fierce MAMA LION. It became my name thru the years of medical care by Drs. surgeons, nurses, etc. Some said it with respect and admiration…others used it as an insult or a blasheme. My son (2 1/2 years old told me out in the hallway he was proud of me for defending him (I guess they heard thru the door). I never yelled at anyone before, and I am exceedingly gentle and good natured…..until someone messes with my kid. We have our Goliaths to slay.
Right on Rolf. When Miichael was 2, the doctor called his heart condition a deformity in my son’s presence. I asked my then 7 year old daughter to step out into the hall with her brother, while I stayed in the examining room with the head of this particular dept. in this very respected hospital and proceeded to verbally (as my father would say) “rip him a new body opening”. I told him with one word he could have undone all the confidence and sense of well being we had nurtured in our son. That we never regarded him as deformed, defected or whatever assinine word he chose to use. I made him apologize to my son, explain in kind terms about the heart condition which is treatable. I scared the dickens out of him and he is lucky I did not punch him out. I am a tiny little person with a sweet nature and was meek before I had my children….then the veil came off and I realized I was a fierce MAMA LION. It became my name thru the years of medical care by Drs. surgeons, nurses, etc. Some said it with respect and admiration…others used it as an insult or a blasheme. My son (2 1/2 years old told me out in the hallway he was proud of me for defending him (I guess they heard thru the door). I never yelled at anyone before, and I am exceedingly gentle and good natured…..until someone messes with my kid. We have our Goliaths to slay.