Scar

A year ago today, MLW and I were taking the mini-Beach Ghost to the hospital where she would be undergoing open heart surgery. She was not yet four months old at the time. To simply note that this was a watershed event in our lives would be drastically understating the case.

I'd planned on marking the occasion here, but when I received this essay from MLW about the experience, I knew it would suit better than any ramblings I'd be able to dredge up. Here it is, with names altered, as always, to maintain at least the illusion of privacy:

It has been a year since our daughter underwent open heart surgery to debulk a cardiac fibroma. The time leading up to the event was, in many respects, the normal stuff of new parenthood: changing routines, adjusting to the presence of another being in our lives and deep emotional bonding. But the Beach Ghostlette's first months also had an overlay of palpable disquiet.

In my hubris, I thought that the pregnancy was the time when I would have experienced the most concern. Having lost pregnancies, I was worried about the viability of our daughter from the start. We conceived her only weeks following a miscarriage. But I was very fortunate. My pregnancy was fairly uncomplicated. I traveled, attended graduate school, worked and enjoyed the feeling of life growing inside me. In retrospect, the pregnancy was a blessed respite from the challenging times to come.

From the birth experience we knew something was amiss. The baby did not tolerate my contractions well. Her heart rate kept plummeting to a worrisome low of 35 beats per minute, causing nurses to scramble and make hurried calls to my obstetrician on and off over a period of six hours. As I labored, hospital staff kept a very close watch on the baby's fluctuating heart rate. It would normalize, and then my contractions would start up again. The scalp monitor digits flashed the bad news in red—35! 35! 35! Pitocin was administered, discontinued, administered, discontinued. My desire to have a vaginal birth was eclipsed by my prayers for a live birth.

The moment of our daughter's arrival was joyous. She was a caesarian delivery, emerging swollen, pink and annoyed. Her cries announced her presence. In my darkest hours to come I reflected on those first moments and savored them.

But by the third day of her life, we were told that something was wrong, that a mass took up the better part of right ventricle. The doctors were unnervingly tight-lipped. As we learned more about her prospects it was clear that no one—no doctor, no parent, no friend—could assure us that she would survive this trial. In this context I tried to act normally.

The next few months were a blur of disrupted sleep schedules, doctor visits, testing and speculation. Our girl seemed to thrive and by any measure was an "easy baby". Her personality was gentle and quiet, and she didn't seem to be manifesting any external signs of distress from the tumor. Her gentleness was only eclipsed by her physical beauty. We considered ourselves very fortunate on many levels. However she didn't breastfeed very easily. I thought little of it; lots of babies have trouble with breastfeeding, I told myself. I just focused on the present: spending time with the baby, finishing graduate school and getting through the winter.

By early February, the doctors had returned with their unanimous verdict: The baby would require surgery to avert congestive heart failure. As prepared as we thought we were, this was still very scary news.

To my final days, I will never forget the moment that the baby's cardiologist ruled out cancer. Since the first day the doctors told us about the tumor, there had been some discussion about the remote possibility of cardiac cancer. It was unlikely, but fatal. A few weeks before her surgery, the doctor had insisted on one more study. A consummate professional and healer, he did his best to play it down but I sensed some real concern. The CT-Scan process took the better part of a morning. I futilely tried to comfort the baby as the nurses inserted IV lines. I lay next to her as she was photographed. I walked her around to quell her anxiety afterwards. But I couldn't shake my own fear.

After the test was done, the baby and I went back to the doctor's office to wait for results. We started talking about the prospect of surgery when the phone rang. There was an almost imperceptible moment of hesitation before he picked up. As he listened, the look of relief on his face lit up the room. He told me that the scan revealed no further mass-type tissue around or outside of the heart. I asked him, “You thought she might have had cancer, didn't you?" It was too direct a question. He demurred, "I saw a shadow in the echoes that I did not like. I had to be sure." I cried with relief.

The day of the surgery was predictably tense and long. My cousin and my mother came to the hospital, but made their presence modestly. At my request people stayed away. I felt burdened by my own anxiety to the degree that I did not feel strong enough to even pretend to be present for anyone else. When the anesthesiologist appeared in the waiting area, I studied every line on his face for some sense of the outcome. His smile told us what we needed to know: the baby had come through the surgery well.

The next week or so was packed with the daily dramas of a big recovery. I stayed in the PICU the whole time, sleeping in the baby's room on a padded bench next to the window. I vaguely remember a big snowstorm. Foolishly I brought study materials in case I would have time to prepare for my midterms. Instead, I stayed close to the baby, staring at the millions of monitors in a state of shock.

When the baby started to surface to consciousness, she experienced enormous distress. I couldn’t tell whether it was the pain, the environment, the feeling of restraint or something else. Her anguish became so acute that no amount of whispers and touches helped. Her hospital crib resembled a little cage. It was almost big enough to accommodate a short adult. So I climbed in next to her. She finally stopped crying. Miraculously, the nurses let me stay there.

Eight days after the surgery we were ready to go home. Right before her discharge, the baby started crying incessantly. My intuition told me that it wasn’t physical pain. It was what Buddhism refers to as dukkha, the pain of wanting and being. She sensed her ordeal was almost over and felt urgency to move on. I touched her and told her, “Baby, I am getting your clothes. I am going to put on your outfit and your coat. Then I am going to put you in your car seat. Then we are going to go home!” She stopped crying immediately. From that moment to the time we got home, she did not shed a single tear.

A few weeks later, she demonstrated her perceptiveness again. Since we had returned home from the surgery, her coping skills began to wane at night. Right around bedtime, she would get agitated. She would wake up screaming from nightmares. I took her to the pediatrician to try and get to the root of the trouble. Was it hospital flashbacks? Physical pain?

After a close examination, our pediatrician paused, reflected and then asked, “Do you talk about the surgery and the hospital experience at home? I mean, do you talk about it with people in front of the baby?” I had to admit that, yes, as part of my coping process I talked about it all the time. “There have been studies on toddlers that they sense and understand the emotional states of their parents as well as a lot of what they are saying. Not so much has been done on behalf of babies, but why would they be any different?” Why indeed. I wept with recognition and guilt. The doctor went on: “It is very important for you to tell her all the time that she is strong baby! No more surgery! It is important for you to manage the experience, for her and for you.” At the words no more surgery her face lit up.

It was obvious pretty soon after she came home from the surgery that the baby who arrived on Election Day 2004 was not the same baby who lives with us now. The strain her heart endured before the surgery made her tired, diminished her appetite and muted her true personality. Post surgery, she went from soft pastels to full Technicolor, eating more, doing more, being more. In retrospect, all of the earlier problems seem to make sense: the birth challenge, the breastfeeding problems, the quietude.

A year later, our baby is anything but quiet. She runs and climbs, talks and points, laughs and loves. She understands the majority of what we say to her. She has mastery over a limited number of spoken words (mama, dada, bippie, banana) and a wider hand sign vocabulary. Her current distress concerns her molars. By the anniversary this week, she should be done cutting the top left one that I felt coming in the other day. My cousin's prayer came true: “May the surgery be a distant, painful memory next year.” And so it is. It is more, though. It is our baby's story of the magic scar on her chest. We plan on telling her that it is like Harry Potter’s lightning bolt--a mark left by the angel doctors who saved her life. It is a symbol of victory, but most of all, it is a reminder of the miraculous.