Today marks the 36th birthday of my firstborn; a son named Jamie. His life was too brief, a mere 23 days. His death sobered me right down. At 19, it was my first intimate experience with death and dying. It marked me for a lifetime. It’s a terrible thing for a parent to watch their child dying, to feel the wrench of separation, to wrestle with the desperate unwillingness to bury the dearly loved, little body in the cold dirt. Losing Jamie was the greatest sorrow of my life.
Jamie was born two and one-half weeks early, and because he was early he was whisked away from me to the NICU for 24-hour observation. Our first moments together were brief. The warm weight of his body on my stomach while the doctor severed the umbilical cord and a moment cradling his swaddled form in my arms was all I was allowed in those first moments after birth.
As soon as I was able I went to him in the NICU. He was a good weight and pink and healthy looking. A nurse took him from the isolette and allowed me to hold my peacefully sleeping son. Even though I’d chosen to nurse him, I was not allowed to at that point as they were measuring all liquid intake. The 24-hour period seemed excruciatingly long, but he was finally released from the NICU with a good bill of health.
In those days babies were kept in the nursery separated from their mothers and only brought to their mothers at designated feeding times. God forbid an infant became hungry before a scheduled feeding. It was common for crying babies to be seen and heard in the nursery and to be left crying.
Finally, Jamie was brought to me to nurse. I marveled at the texture of his skin so unbelievably soft and breathed in that wonderful new baby fragrance. His head was crowned with a short stubble of silver hair. Silver; as though he had turned prematurely grey. He was awake and curious, and as I held him on my shoulder for burping he lifted his head and blinked his blue eyes and peered up at me. He was ready to see his mama. His head wobbled and his nose bumped gently against my cheek.
Most new mothers describe a feeling of love for their baby as the most intensely, exquisite love they have every felt. To their utter surprise they find that they love their child more than their own life and value them above themselves. This kind of love was visited upon me.
After a lengthy stay which was mandatory then, Jamie and I were to be released. But, Jamie failed the blood clotting test and could not be circumcised. To my knowledge, the physician did not delve into the mystery of this. Jamie was given an injection of B-keratin to help his blood clot and commenced with a successful circumcision. We were released later that day.
Once we were home it seemed to me that Jamie soon lost his healthy pink color and grew very pale. He did not nurse aggressively or seem to thrive. He cried during the first few nights for no apparent reason, and though he was fed and dry I could not sooth him. I moved him to sleep in the crib in his own room at night and he slept better. But, during the day I noticed that he was gradually becoming more and more lethargic with less awake time. My instincts nudged me that all was not well. I had a lot of questions and really wished his first doctor appointment wasn’t so far out. Well-meaning family and friends assured me that I was just a nervous, new mother and that my baby was fine.
Then one morning I jerked awake at 5:00 a.m. Jamie had slept through his night feeding and still had not awakened me with a hungry cry. I leaped out of bed and hurried to his room. He was sleeping soundly in his crib. He was groggy as I lifted him and carried him to the sofa to nurse but he was too lethargic and limp to do so. I called the doctor’s office and reported this to the front desk receptionist stating to her that something was very wrong and begged to bring Jamie in that day.
His daddy and I stood over Jamie anxiously while the physician performed an examination. Because he had missed two feedings the physician pronounced him dehydrated and saw signs of infection on his naval where the umbilical cord had fallen off days before.
The doctor looked at us. “Take him to the ER and I’ll meet you there.”
Jamie was admitted and the tests began. The first test was a spinal tap to rule out meningitis. The result was negative. X-rays were ordered and it was found that Jamie had one kidney of normal size while the other was significantly undersized. The physician was suspicious of ureteral blockage but could not be sure without catheterization with dye injection for better imaging.
Catherization would take place in the common femoral artery in the thigh. As the common femoral artery (CFA) can often be palpated through the skin, it is often used as a catheter access artery. From the CFA, a catheter can be directed anywhere in the arterial system for intervention or diagnostics, including the heart, brain, kidneys, arms and legs. With this came the risk of causing the tiny infant artery to collapse with the possibility of loss of limb.
I was horrified to think that permission to conduct the procedure might leave my son a one-legged baby. No other options were offered or discussed. I went into denial. This could not be happening. I can only describe myself as stunned and bewildered and silent. Outwardly I appeared stoic. Inwardly I was wracked by angst and as fragile as glass can be.
The dye stopped short of flowing into his kidneys. A ureteral blockage was the probable diagnosis. His femoral artery did not collapse and his leg was unaffected by the procedure.
The NICU in this hospital was not equipped to intervene for an infant with this type of diagnosis, and it was suggested that Jamie be transferred to Crouse Irving Memorial Hospital in Syracuse some 50 miles north of our home in Whitney Point, NY. Jamie was transferred and a surgeon met with us to discuss exploratory surgery. We were told that it was the only way to confirm the area of the suspected blockage.
After the surgery, the surgeon met with me and my husband to give us a very grim prognosis. He had polycystic kidney disease. Renal failure due to ureteral blockage was confirmed. Toxins had backed up into Jamie’s kidneys destroying them. Infection was rampant. His bloodstream was slowly being poisoned, thus the lack to thrive and the overwhelming lethargy.
The surgeon looked at us and told us there was nothing he could do. He said, “There is no hope. It’s just a matter of time before he dies.”
I did not want to believe him. I even felt some hatred toward him for delivering such a devastating message that spontaneously shattered our hearts, hopes future and our very lives.
The rest is a blur. I functioned like the walking dead. My husband still had to go to work, and I languished in pain at home all day. We drove the 100 mile round trip in the evenings to be with our dying son. We would arrive at the NICU, wash and put on sterile scrubs and stand or sit beside Jamie’s isolette. My only physical contact with Jamie was by reaching through the two hand holes on the side of the isolette to stroke him or hold his hand.
An IV line was threaded into a vein on his head. Patches of silver hair were missing where it was shaved for the IV which had to be moved several times. A vertical incision ran the length of his abdomen. The tubes and wires were intimidating; it all looked like a foreboding mess.
One night Jamie somehow managed to wiggle himself closer to me with his side up against the isolette his little fingers wrapped around mine. A nurse stopped to observe this and asked Jamie how he had managed to inch his way over.
“He knows you,” She said to me. “He’s trying to get closer to you.”
She opened the isolette and lifted him to reposition him in the center of the isolette and then began changing the bandages on his abdomen. The surgeon had detached Jamie’s ureters from his bladder and brought them permanently to the surface of his abdomen to drain. My brief impression of the two sites was “hamburger.” I had to look away.
I wish I could have taken Jamie’s pain on to myself or traded places with him. I would have gladly died in his place so he could have lived. My heart felt like it was slowly dying with him.
Always the words “He probably won’t make it through the night” and “It’s just a matter of time” were repeated to us at our visits until I wanted to scream, “I get it! He’s going to die. Now, shut up and stop saying it!”
Jamie hung on much longer than the NICU physicians thought he would. One evening, he was much worse. Finally, a nurse offered to let us hold him. She unhooked the monitor wires and wrapped him gently in a blanket and laid him in my arms with only the IV attached. Jamie slept in my arms, but in his sleep he periodically drew his legs up as if in pain. Undeniable dread filled me as I sensed that this could be our last time together.
The call came the next morning. My younger sister Julie was with me. I had given her the task of screening phone calls. I’d had to repeat the words, “He’s going to die; it’s just a matter of time,” to family too many times. I didn’t want to talk to anyone anymore. We were sitting at the kitchen table coloring with crayons in kids coloring books. It was a mindless activity to get me through the endless minutes of the day until I could see Jamie that evening.
I jumped when the phone rang, and I knew it was the call. I was too afraid to pick up the phone and asked Julie to answer. It was the hospital. She passed the phone to me. A female physician I had never met identified herself.
“I am doctor so-and-so. I think we have met before.”
“No.” I replied. "We have not." I had not met a single female physician in the NICU.
“I am sorry to tell you that Jamie passed away at 11:40 a.m.,” she said in a tone that sounded very impersonal to me, as though she were reporting the weather.
I felt the blood drain from my face and my heart constrict with pain. My throat clogged with emotion and made a sound like a wounded animal.
Her tone softened with empathy as if she’d just remembered that she should use some. “He seemed to go peacefully.”
It’s difficult to cry silently while your heart is being ripped apart. I stood there with the phone pressed against my ear, pale and white knuckled trying to listen and choke back the wails that were demanding an exit.
She continued gently. “We’d like to do an autopsy with your permission. Can you and your husband think about it?”
“No.” I said adamantly. “We don’t need to think about it. He’s been cut up enough.”
It didn’t help that my sixth grade teacher had described an autopsy in graphic detail in elementary school which had stuck in my memory forever.
“I understand,” she replied. “Let us know if you change your mind.”
“We won’t,” I assured her.
The loss of my baby son was like an emotional amputation. Part of me died and had been dying since the day of his admittance. During the days after his death I went through the motions of living like a sleep walker. Once in bed I would fall apart and weep quietly until I cried myself to sleep. Sleep was my only escape. I would wake in the morning to find fresh pain waiting for me. It was as though I was dying a thousand deaths over and over. Sleep to forget. Wake to remember.
A great sorrow descended over me like a weighty blanket of darkness that I could not shake. It was like a heavy, unwelcome cloak on my back that dragged around with me. I wrestled with all the symptoms of grief; the pain of loss, the questions, the anger, the guilt.
I felt responsible for having produced a defective child who had to suffer and die because somehow my reproductive system had not developed him properly. And I raged at God for not intervening and changing the outcome. I believed that at the least God should have arranged the timing of Jamie’s death so that I could have been there. I should have been holding him in my arms when he died. I felt cheated. It felt unfinished. I should have been able to witness his last moments.
I felt responsible for having produced a defective child who had to suffer and die because somehow my reproductive system had not developed him properly. And I raged at God for not intervening and changing the outcome. I believed that at the least God should have arranged the timing of Jamie’s death so that I could have been there. I should have been holding him in my arms when he died. I felt cheated. It felt unfinished. I should have been able to witness his last moments.
I could find no comfort and was completely without hope. Having no relationship with God other than head knowledge of Him provided no foundation of faith to stand on. I was alone to suffer...all alone. My heart died but my body refused to lie down and die also. It was as though my body was mocking and betraying me by refusing to reflect the devastation and death of my heart. I felt like the living dead.
My husband and I processed our grief individually. We internalized it in a way that caused a distance between us. We were both suffering badly, and even though we had each other we felt totally alone.
We shared the thought that we might never try to have another child because we didn’t want to risk putting another one through what Jamie went through. We felt guilty, and to risk it again would seem selfish. But, the officiating Pastor at Jamie’s funeral had whispered these words to us. “Don’t let this stop you from having other children.” Somehow his words sunk into our subconscious and took root. Somehow we muddled on.
I did not keep a journal during the days of Jamie’s short life. Much of what occurred remains a blur. Jamie’s medical records have long since been destroyed. There are only two photographs of him, his little hospital wrist band and his tiny footprints on a page in his empty baby book as the only physical evidence of his life.
I understand that Jamie is with God. I no longer think of him as a baby but as a grown man, and I call him James now. I eventually surrendered my broken heart and life to God and found peace, hope and faith. All these years later God has mysteriously turned the loss to gain. I don't quite understand how God healed my broken heart, but He has. It's one of the mysteries of God.
Having experienced this much of life I am glad that James never knew sad things like rejection, loss, failure, sin, hopelessness, betrayal, and the myriad of difficulties and trials that we face in this world. Though the number of his days was few, “the sharp knife of a short life,” his life intertwined with mine in a way that marked me and will haunt me until the day I am reunited with him.
Having experienced this much of life I am glad that James never knew sad things like rejection, loss, failure, sin, hopelessness, betrayal, and the myriad of difficulties and trials that we face in this world. Though the number of his days was few, “the sharp knife of a short life,” his life intertwined with mine in a way that marked me and will haunt me until the day I am reunited with him.
"Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring grief to the children of men." ~ Lamentations 3:32-33
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." ~ Lamentations 3:22-23
I am grateful that God did not give up on me when I gave up on Him. He had the love and patience to eventually save and heal me. The turning point came much later. But, that story is for another day.
Happy Birthday, James.
