“Brevity is not done, clarity is in the details. Celebrations have other motifs; only the undying passion is the constant impetus….”
The journey which starts from diagnosing a child with a Congenital Heart Defect, to getting her home after a cardiac surgery is a rather long and arduous one. It’s like a relay race, wherein the baton passes from the pediatric cardiologist in his OPD chamber to the pediatric cardiac surgeon in the Operating Room to the pediatric cardiac intensivist in the ICU after surgery.
The “pediatric cardiac intensivist” is a rather niche bunch of people who dedicate their professional lives towards heart treatment for under privileged children. As the description suggests, it entails exclusive care of critically ill children with a multitude of pathological, social, emotional and financial implications. The pediatric cardiac intensivist supervises care of the babies, right from the time they come out of the operating room to the time they are discharged home. Not only does one need to look at the cardiac function, but at all the other organ systems too, which are required to be working in tandem if we are to send such fragile kids home.
The word “ICU” conjures up such fear and trepidation in minds of parents that the first and foremost duty of the cardiac intensivist is to allay the parents’ anxiety. The usual daily counseling sessions in the cardiac ICU is a window for the intensivist and the child’s parents to acquaint themselves with each other and be on the same page regarding the clinical status of the sick kid. Communication ought to be scientific and accurate and it needs to be delivered in a lucid manner. This would be the cornerstone of parent-doctor relationship in usual circumstances. However, as the postoperative course in a pediatric cardiac patient is often complicated and/or prolonged, the intensivist often finds herself being judged for what is perceived as “ineffective communication” while explaining the same to the families. Parents also often seek definitive answers regarding “date and time” of further improvement and eventual discharge from ICU. As unpredictably as human bodies work, it is nearly impossible to answer such queries in the definitive.
India still lacks an infrastructure providing affordable, accessible, timely and holistic cardiac care to those who need it the most. This holds true especially in case of post-operative cardiac ICU care for children and their families. Ideally the intensivist should have to “only” explain the medical complications to parents while the emotional and financial ramifications of the same are addressed by the social counsellors. However, the resource-limited country that we are in, I often find myself not only describing the post-operative developments to parents but also making an earnest effort NOT to be the one- stop-shop for all other concerns families may have. Alas! I always fail… Empathy has no substitute or any waiting-in partner, I have come to know. And I am forced to step out of “a-strictly-clinician’s shoes” and also play the friend, guide, counsellor and decision maker that such parents often need.
Sometimes I wonder if the intensivist should just be part of a collage that takes the credit or discredit for the patients’ outcome collectively. I question myself when I am alone to witness parents’ pain, suffering and misgivings if the outcome of baby turns out to be unfavorable. The other end of the spectrum is a positive outcome of patient in which the intensivist remains an unsung hero. It’s agonizing to beat the backstage while spotlight turns on the others!
And I find myself saying: “Hey, I spent hours at the baby’s bedside watching his heart rate, checking his pulse, measuring his urine and poop! Mine was the face he beheld when I pulled out that endotracheal tube, mine was the hand he clutched while his mom was waiting outside the ICU! That’s what keeps me going relentlessly: for a healed child to belong to me as much as he belongs to his parent’s, even if it is for a brief period in his entire lifetime.
Every single day, for years together, I leave home to perform duties driven by passion – to provide heart treatment for under privileged children supported by the quest to keep acquiring knowledge and bolstered by those pats on my back, smiles of the recovering kids and heartfelt appreciations from the happy parents.