Gerard's Story
My first son, Timothy, proved the truth of this to me in his first few months of life. I really thought I was prepared for having a child, and yet Timothy showed me with each new day how little I knew, and how even more wonderful parenting was than I had ever expected. One is inclined to get a trifle arrogant when parenting seems so easy and pleasurable. I certainly thought I knew what I was doing when I planned to conceive a second child shortly after Timothy’s second birthday. Wrapped in the hazy memories of those glorious first two years with my Tim, I was totally unprepared for anything other than a normal birth, a perfect child, and my happy life to continue forever with no painful intrusions from the “real world.”
With the exception of some terrible morning sickness in the first trimester of my second pregnancy, everything seemed to be going as planned. I was tired most of the time, but still excited by the thought of getting to see this new individual emerge. Tim’s patience was tried by my frequent visits to the bathroom and by my need to have frequent rests during the day, but absolutely nothing seemed out of the ordinary. As I passed the morning sickness stage and entered into the second trimester of my pregnancy I was so elated.
My obstetrician scheduled a routine sonogram for me at 16 weeks, just to make sure the baby was growing properly and doing well. I had no worries that they would find anything problematic, so I decided to go to the appointment alone while my husband and son went to a nearby park to play. Aside from secretly wishing for a girl, I had no other thoughts about the sonogram except that I hoped they would get me in quickly so I wouldn’t have to hold that water in my bladder forever.
At first the sonogram seemed to go as planned, the miracle of tiny fingers and toes , arms and legs and a sweet rounded head displayed themselves on the screen. The technician pointed out each little part, including the fact that my baby was a boy. By then it simply didn’t matter as I looked at that adorable defenseless child swimming around so happily inside me. The technician’s manner seemed to change abruptly. Suddenly she was no longer talking, and instead taking slide after slide of my child’s heart. “What is going on,” I asked, terrified to hear the answer. She told me that she could not tell me but that she would be back with the radiologist on staff in a moment.
She returned with the radiologist and they both looked at the screen, completely silent. I began to get angry and upset and told them they had better tell me what was going on. Still no answer from the two of them, so I simply stated “If you don’t tell me what the problem is then I am not going to leave this room.” The radiologist replied that he would call my obstetrician and ask for permission to disclose his findings directly to me. He obtained permission and was back in a few moments, telling me to follow him to a room where he could explain this.
My husband had fortunately returned from the park, so he and my son traipsed into a tiny room where pictures of my unborn child’s heart were displayed on several lighted screens. “What we basically are seeing is that your child’s heart is on the wrong side of his chest. We can’t really tell you what this means. Some people have their heart on the right side of their chest and have no problems. But you need to get to a pediatric cardiologist and have them take a more conclusive exam.” I was given instructions to call UCSF and make an appointment for a fetal echocardiogram. At that point I didn’t even know what a fetal echocardiogram was, only that it sounded incredibly frightening.
Numbly, my husband and son and I filed out of the office. I don’t know how I made my feet work, or how I got to the car. Total shock and disbelief consumed me. This was not what I had planned. How could this happen to me? Even worse was not knowing exactly what was going on. I got home and made the appointment, which the office wanted to schedule for several weeks later. I begged them to see me sooner, as soon as they could. I will never forget how much compassion the echo office showed to me by squeezing me in for an echo just two days later.
I put those two days to use by feverishly getting online and combing the internet for anything I could find about heart defects. At that time, about a year ago, there was precious little available, particularly on a rare defect like my son’s. But I took in everything I could get, figuring if I could learn what the worst possible scenario was, then I wouldn’t have foolish hopes about the future. During that search I found the wonderful listserv Pediaheart, where I found other parents who had children with heart defects. Over the next few months of my pregnancy, these parents became my lifeline and my greatest support.
Two days after that sonogram, I found myself and my husband Allen on an early morning drive to San Francisco. As we drove over the Golden Gate Bridge, I was stunned by the complacency of everyone else. People were driving to work, talking on cell phones, photographing a stunningingly clear Bay. I was painfully reminded of the wonderful Auden poem Musee des Beaux Arts where the poet describes the Brueghel painting with Icarus falling into the sea. The picture, as Auden describes it, has so much going on in it that one hardly notices Icarus drowning in the background. I almost found myself angry that life could just go on like this when my life had stopped dead still.
It amazed me how my senses were heightened by my panic. I recall the coldness of the air up on the top of Parnassus (where UCSF is located). I soon learned that it is always cold on the top of that hill, although the view of San Francisco is imcomparable. We got lost trying to find our way to the main entrance to the hospital. I recall trudging down several flights of a dark staircase, only to discover that we should have gone up instead of down.
We made our way through a maze of parking lots, and then through a maze of a hospital which now feels like a second home to me. Finding the echo lab, we only had to wait for a few moments before we were called in. In two short days , I had become well acquainted with the anatomy of the heart, and was ready for just about anything. I guess my questions were fairly good, because the echocardiologist, Dr. Silverman, asked me if I was a physician. I answered him, “Not yet, but give me a couple of months and I will be if it helps.” Being a man with a sense of humor, Dr. Silverman got to tease me for months afterwards about how I was going to hang out my shingle and put him out of business. This little bright light of a laugh helped to diffuse the tension I was feeling, but only for the moment.
The diagnoses dropped like ever so many weights upon my shoulders, not just dextrocardia, but pulmonary stenosis, transposition of the great arteries, a huge VSD, perhaps asplenia or polyspenia -- no way to tell yet. It was worse than I expected because somewhere in the corner of my mind I had doubted that they would find anything. I had truly believed that they would say it was all a big joke and laugh at the incompetence of untrained techs in a hick town like Santa Rosa. I could not really cry, I was so angry and I felt like if I let go the tears that I could feel coming that I would weep forever. But I wanted to be professional. I wanted desparately to understand what all of this meant, and I felt as though I would be thought of less if I let go at that moment. I still remember how angry I was that despite my efforts, tears welled in my eyes and betrayed themselves by running down my cheeks even as I tried to ask sensible questions.
Dr. Silverman apologized most sincerely for my child’s defects and I had to bite back a hysterical urge to laugh and cry at the same time. On the one hand, I knew it was not his fault, and yet at the same time, I could feel how sincerely he meant his apology; for that one second, he knew my pain, no matter how hard I tried not to acknowledge it myself. We were given the option to terminate the pregnancy. This was not even an option for me. As soon as I was assured that my child’s defects would cause him no discomfort in utero and that he had a slim chance of survival, I never gave a serious thought to ending my child’s life. He was happy and doing well where he was. I didn’t know if the surgeons who would help my son after he was born could sustain his life. But for now my body could sustain him in the perfect wholeness of the womb.
We were sent home with odds little better than a coin toss for my son surviving. We were told to come back for more studies and to arrange to have my child induced at UCSF because we were 60 miles away from the hospital. As I left the hospital, I just felt like I wanted to have several bottles of wine and forget it all. Of course I didn’t, but I was sincerely tempted.
The challenge of living with this kind of pronouncement of doom on a day to day basis is certainly not met easily. I gravitated between bitchy and exhausted, nagged my older son and my husband. I went for months without a good night’s sleep. My mind raced on the possibilities ahead, and where before I had wrongly believed that it was all a mistake, now I believed that there was really no hope for my child. I flashed on scenes where they took him away from me at birth only to come back a few hours later to tell me that he had died.
Despite my negativity, my sweet baby made his presence known in a series of joyful kicks that always dispelled a little bit of my fears. My son was certainly incredibly active!! He kicked me from morning to night with no mercy. I truly believe he never slept for more than a few minutes. His almost hyperactivity convinced me that he would not give up this life easily, that he was a tremendous fighter. I set about choosing a suitable name for him, and looked in baby books for all the names I could find that would express the strength I knew he possessed. I chose the name Gerard, which means spear hard, pronouncing it as the Irish do as Jarad. His middle name Myles came from my older brother, a gifted musician who has often had fortune smile on him. Naming my child was truly cathartic, and when we met several months later with Gerard’s surgeon Dr. Frank Hanley, he expressed how he hated to talk of unborn babies as “the fetus.” I told him he didn’t have to. Pointing to my stomach, I said “This is Gerard.”
I can’t possibly describe the fluctuation of moods in those months leading up to Gerard’s birth. I did worry very much about how this would affect my older son. Timothy would be away from me for an unknown period of time. I did tell him as much as I thought he could handle, and even that we might not bring our baby home. But Tim’s confidence in Gerard coming home gave me hope. Children can be amazingly perceptive, and I figured he might know more about it than I did. Each night, Tim would nearly fling himself onto my tummy, hugging me tight and whispering “Good night baby Gerard,” into my belly button.
The months dragged and as I neared the final days of my pregnancy, I was both anxious to get it over with and “know the worst,” but also reluctant to let my wonderful baby go. All those months in the womb were my protective embrace, and soon he would leave this warm nine month long “hug,” and be quickly lifted into the arms of strangers who would hurt him, draw his blood, resuscitate him if wasn’t breathing and et cetera.
Gerard’s was not an easy birth,partly I think because I really did not want to let go of him. The labor took many hours, but finally at 3 am on July 24th, our sweet boy made his appearance. I saw him for one moment and blessed him before he was whisked through a small window into another room. His lusty cry, which made me ache from tip to toe despite an epidural, also at least assured me that he was breathing.
He was wheeled by my room on the way to ICU several hours later. I could not hold him until late the next evening when they felt he was stable enough to hold. How my heart and arms longed for him. I felt so distanced and separated from him as he lay in a warming bed, a mass of tubes and wires, incredibly still and yet so, so beautiful.
An echo done a few hours after his birth brought good news indeed. His defects were severe but he did have a spleen, as well as normal pulmonary arteries. I was elated by the news but terrified at his impending surgery.
On July 25th, he received a BT shunt. I ‘m still unsure how I got around the hospital having just given birth and actually sat on those uncomfortable chairs in the waiting room, waiting and waiting for news of the surgery being over. When Dr. Hanley found us standing outside the waiting room, I have never heard more beautiful words than “He did great, you can see him in a few minutes.” All I could mumble was a thank you, and then turn to my husband and cry and cry. We rode down in the elevator with Dr. Hanley and I was still crying, unable to tell him that as far as I was concerned he was an angel sent from heaven, that he had given me the most precious gift of all, time with my son.
That night was the first night I ever dreamed of my child. I dreamed of holding him and seeing him laughing and smiling and healthy in my arms. Before that I had never permitted myself to hope, but now hope warmed throughout my muscles and my skin, straight into my heart, the blessing that had been handed to me shone rays of joy.
We returned to the hospital in early November for Gerard to have the Glenn shunt done. This operation was remarkably successful, and we were released just six days after the surgery. Since then Gerard’s progress has been remarkable. At 9 and 1/2 months he weighs a hefty 20 pounds. He is just beginning to crawl, sit up by himself and babble away like he’s trying to talk.
I confess I still have days when I get overwhelmed by worrying about him; we are not out of the woods yet. But Gerard has given me a whole new path to follow. He is my inspiration for wishing to reach out and help other families who have children with heart problems. I have laid aside those vaguely formed reasons for having a child, and have given up "planning" out my kids' lives. Being in contact with these two wonderful children I've been blessed with has taught me that such plans are pretty worthless. I wish , of course, that Gerard had been born with perfect health. But I wouldn't trade my experiences with him for anything.
Gerard’s life has shaped mine, I suspect more than I will shape his life.
He has given me a way to see life as something that cannot possibly be valued
enough. His strength, his smile and his life force are what I wear in my heart
and wish to give of to others.
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