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01-22-2007, 10:42 PM
[left:d3ba5f74c8]http://www.cherubs-cdh.org/Album/new/myers2.jpg[/left:d3ba5f74c8]We have a perfect life. Both of us are young, strong and healthy. Our careers are going very well. We have a beautiful home. We are surrounded by a large and caring family. At just twenty-nine years we have so much. With such a stable and happy environment we decided it was time to start our own family and we were lucky enough to get pregnant around the New Year. My wife looks more beautiful than ever. She is experiencing no ill-effects of pregnancy which so many other women know so well. Everything is perfect.
After the first trimester we are getting ready for the first ultrasound. I had to be in Europe but delayed the trip a day so that I wouldn’t miss the event. We were led into the Ultra Sound (US) room by a very nice middle aged woman who looked at us with the approving joy of an experienced mother. As we watched I felt a bit insignificant compared to the miracle that I saw before me on the black and white screen as a tiny new life waved at me from my wife’s belly. Madeleine looked at me with a happiness I had never seen before as we stared in awe at the miracle of life that rolled playfully before us.
Then, came a knock at the door and in entered the radiologist. She was slight of build with a school-girl pony tail. Her smile was very kind and her manner was light as she skillfully took control of the US machine. My wife and I watched once again as our child played hide and seek on the screen before us. Neither of us really noticed the soft determined conversation of the technician and the radiologist; our happiness was blinding. However, vision became all to clear with the cruel invasion of the words that fell from the doctor’s mouth like a weight all to heavy to bear, “there is a problem...”.
At that moment it was like I was outside of my own body looking in on drama which I could not escape. I watched my wife’s eyes well with sadness as the doctor explained that our baby had a diaphragmatic hernia and this meant certain surgery and that the odds were not good. I wanted to cry. My grip tightened on Madeleine’s arm. The technician and doctor left us alone in the US room to gather our composure. As the door closed the silence surrounded us and the gravity of our baby’s condition pulled us together and both of us shook with sorrow and disbelief. We cried.
Leaving the US room was very hard as we had to go through the reception area that was full of joyous expectant mothers. I could sense their fear as they steeled glances at us; our sorrow was too great to disguise from them. They began to feel doubt about their own pregnancies and this amplified our pain. We wanted to run.
Regular life stopped the second we were delivered the revelation of our baby’s impending battle to survive. The gleam of our achievements disappeared as their significance were washed over by the tide of our sadness. Both my wife and I have never taken our families for granted and have openly proclaimed many times that family is the most important thing that anyone has: Tragedy crystallized this vision and we instinctively went to our family.
I telephoned my mother-in-law and told her what had happened as best I could. I could barely get it out as the emotion choked my throat. She began to cry and through her staggered breath she told us to come home. And that is were we ran.
My wife’s parents live about an hour and half drive from Halifax on the eastern shore of Nova Scotia. Their house overlooks a cove that is sheltered from the pounding open ocean by a small tree covered island. It is a place were you feel welcome, warm and safe. We have often gone there to heal and now we find ourselves looking for its powers to help us through what has become the worst thing that has ever confronted us as a couple.
Grief soon turned to action. Madeleine and I searched the internet for any information we could get. What we found was not encouraging. Fetal diaphragmatic hernia only occurs once in five thousand births. The infant mortality rate is high with a 40% survival rate and possible further complications for the child in the event of a successful surgery. The process of gathering information hardened us somewhat to the cold reality of fighting against the odds. We have an appointment with the pediatric surgeon next week to discuss our situation and at least we will be able to ask some semi-informed questions. My wife then had to endure a battery of tests to see if there was anything else wrong with the child. This had opened up another dark closet of fears to which we both had tightly closed our minds’ eyes.
We had a few days before our meeting with the specialist and the time went very slowly as waiting without information is a hard thing to endure. We walked long through the woods. There was ice on the ground and we negotiated it with care, but my wife lost her footing and fell lightly to the ground. No damage done. As I helped her up she looked deep into my eyes and told me she was sorry. The moment held as our eyes remain fixed. I felt it first in her shoulders as I held her trying to fight the sadness that was quickly taking her. Her eyes suddenly become overwhelmed with tears and her body shook as I pulled her close to me. We clung to each other trying to find shelter in one another.
I know in the back of Madeleine’s mind she was wondering if she has done something wrong that has caused this. That is why she told me she was sorry. Although all reason would contradict such a foolish conclusion when we did everything recommended to ensure a healthy pregnancy. Yet, I don’t think that a man will ever be able to understand the connection that a woman develops with the life that grows inside her
Finally we descend through the tree line and are overtaken by the beach and its rustic beauty. This is a special place. The beach is like a snapshot from time as it has not yet fully developed to sand. There are no jagged stones just mounds of smooth rocks crafted by the tide into pieces of art, like millions of polished spheres heaped carelessly in the cove. We could feel the energy of this place as we sat silently looking upon the ocean’s horizon. The sound of the sea at work on the rocks was soothing. I held my wife in my arms and we both knew then that if we learnt next week that our child has a fighting chance we would take it. We also knew that if this was not meant to be we would survive even though a precious piece of us would be gone forever.
At five thirty in the morning on September 15, 1997 Madeleine and I woke from a fitful sleep to prepare to meet our unborn child. Through the past months we had wrestled with the knowledge that our baby was battling for survival in Madeleine’s belly against the demon we had come to know as diaphragmatic hernia. Our pregnancy lasting to full term was a miracle in itself. In the womb the baby’s heart is under tremendous pressure from the misplaced organs and heart failure is the greatest threat. We were told early that our child’s chances would increase as we passed milestones and making it to thirty-nine weeks was our baby’s first hurdle in a long race for survival.
We arrived at the IWK Grace Hospital in Halifax at seven in the morning for a scheduled induction. The doctors had determined that it was much better for everyone that our child be born in a controlled environment. After a few hours of administration and tests the doctors were ready: Madeleine started her I.V. of oxytocin at ten thirty that morning and her first contraction came at ten thirty five.
Our nurse, Maria, was tremendous. She helped us through the labor with outstanding competence and care. As Madeleine’s contractions became more frequent and intense my heart sank with the helplessness of watching the woman I love in such pain. I watched as her body tensed in bold confrontation with the mysterious tempest that exploded inside of her. The waves of this pain became more frequent until they were no more than ten seconds apart. Madeleine was crying for relief as I tried to comfort her but my words seemed strangely out of context. Madeleine was focusing her strength and Maria was watching, knowing, helping. I watched like an outsider to an ancient rite.
At two that afternoon we could see the top of our baby’s head. With this the warning was sounded and the neo-natal team assembled in our room ready to save our child from the certain suffocation that waited when our baby would try to sustain life with one small lung. Our delivery room was full when Anne, our family doctor, asked Madeleine to start pushing. At this stage Maria ran the show. She guided Madeleine through the delivery instructing when to push and when to relax, Maria had done this many times and her confidence made us feel comfortable in spite of the looming audience of medical staff watching from only a few feet away.
Shortly after three o’clock the baby’s head was nearly out. I watched in fascination as suddenly, after one great push, our baby slid into Ann’s arms. At that moment I was able to forget about all that was going on around us. All the worry and fear were blinded by an uncontrollable flash of pride as I looked upon my son. For that instant I was like any other father who meets their child for the first time: At seventeen minutes past three on September 15, 1997 I was bound to my child, Connor Alexander Myers, forever. Time, however, quickly started again.
The neo-natal team took Connor to the other side of the delivery room and immediately started working to save his life. Connor needed to be artificially ventilated if he was going to survive. I held Madeleine’s hand as she lay on the bed. I tried to make her feel comfortable, as I would steel glances at the team working across the room. I looked at Madeleine as reassuringly as possible but I could sense the tension surrounding our baby. It was hard to discern what was happening with the collection of steely poker faces working on our son except for a brief instant when I met the eyes of the senior resident.
Paivy (pronounced “pie-v”) is a lovely young Finnish woman in her third year as resident in pediatrics. She had met with us earlier in the day to review our case. Paivy is the type of person that you instantly like, the type of person you instantly trust. During our brief connection I knew that Connor was in jeopardy. The knowledge was so disheartening that the only thing that prevented me from crying was the pain I knew Madeleine would feel if she sensed I was distressed. The emotion was still too weighty for me to look directly into her eyes, as I knew she would immediately see my soul crying for our son. So I held her.
The minutes crept forward; the scene was surreal. After what seemed to be seconds shy of eternity Dr. White, the Neonatologist, stood up and dispelled the darkness in the room with the words “he’s stable". He was kind enough to wheel the small heating table on which he had saved our son’s life over to us so Madeleine could hold Connor’s hand. We both cried the instant she touched him. That brief connection of flesh made us a family. When they had to take Connor away the fabric of our collective soul ripped and we both were choked by the possibility that it may never be mended. Madeleine needed time to settle from the rigors of birth and our angel Maria guided her to the best level of physical comfort that can be expected after such an ordeal. The pain of birth was insignificant to the emotional pain that a mother feels when her child is in danger. Madeleine bore the weight of our family’s suffering like Christ’s cross and the gravity of her distress was crippling to both of us.
Within hours we were able to see our son again. When the automatic doors to the intensive care unit opened we passed the threshold into another world. We had visited the unit months before and the emotions it created in anticipation of this day were suffocating. The pain felt then was amplified by the cold reality of seeing our child in intensive care. Connor lay with his arms stretched out from his sides. His face was obscured by the ventilation hose, which went deep into his body. The myriad tubes and machines hummed and beeped in unison. At the center was a beautiful little boy playing bandleader to the strange orchestra of machines which sustained his fragile life. He was heavily drugged and immobilized. We held his hands and wept.
That evening our family came. The IWK supports family involvement and we were allowed to bring them in twos to see our son. As we approached the nursery a doctor met us. Madeleine did not yet have the strength to stand so I was behind her pushing the wheelchair. In clusters our family stood behind us in disbelief as the doctor began to tell us that Connor’s condition had deteriorated. Madeleine shook from grief under my hands as he methodically described the setback. Already stunned from the day the words punched us both and we took it without defense. He described that the first few hours of stability after birth were merely the “honeymoon” and that Connor had become unstable and nearly died. Just seconds before our arrival, this doctor had saved our child’s life but the price of survival was exacting a high tax on Connor’s small fragile lung. His instability made the chances of early surgery unlikely and our hopes deflated.
Later, after we left the nursery and our family had gone, Madeleine and I were alone in our room for the first time that day. Both of us were exhausted. The day’s events had taken its toll on Madeleine. Her bright features were dulled by the cloud of uncertainty that Connor’s instability had created. At around midnight she insisted that before we tried to sleep we had to go back to the nursery. She told me she needed to kiss him. At first, in almost delirium, I saw this as a source of additional strain for both of us and cautioned against it. Madeleine started to cry and then the revelation struck me: She was thinking that if our baby died that night she would never have kissed him. When we returned to the nursery it was very quiet. The activity that was buzzing in the place earlier that evening had settled down and the world seemed to be resting. We approached Connor to find that he too had settled with his surroundings and that he was stable the price of which was not nearly as high as it was only hours earlier. Both of us kissed his hands and smiled upon him, able to look past the tubes to see our son. I told Madeleine that no matter what would happen I would not regret our decision. In the space of only a few hours on this earth our son had added strength to the existing solid bonds of our family. He summoned a love from within us that I had never felt before. He had changed our lives for the better when he was in the womb and he continued to do so every second he was on the earth. This little boy had already given so much I prayed that we would be given the opportunity to give something back to him. The surgical team had set a tentative surgery time for Saturday that week. However, Connor had remained stable since his setback and they decided to operate on Wednesday, September 17 at five in the evening. Pushing up the surgery was a good thing for Connor as it would allow him to get past the necessary trauma of rearranging his organs and get on with the healing process. Surgery, of course, not only offers hope it creates fear.
On the day of surgery our family priest, Reverend Wayne Lynch, called me to see how Madeleine and I were doing. I knew that he would like to baptize Connor but would not ask to do it. I am not an overly religious man in the organized sense but I could see no harm in Connor’s baptism. In fact, if God would take a hand in saving my child I would gladly accept the help at any cost. Wayne arrived that afternoon and he, Madeleine, and I stood over Connor as Wayne anointed him with water and prayed for him. Connor lay still before us. Watching Wayne place his hand on my son’s tiny forehead brought me back to a scene many years ago when Wayne did the same thing to my grandfather before his heart surgery. The emotion was overwhelming as I remembered the pain of losing my grandfather and now I was reliving the scene with my own son who had not yet had a chance to live. For some reason I refused to cry. Madeleine wept in my arms, our sadness was immense.
Shortly before five we watched as the neo-natal team prepared Connor for transport to surgery. Twice the word came that the surgery time had been pushed back and they would have to reconnect his life support to main power. Madeleine and I tried to encourage one another with faces of bravery but the pain was too much to conceal. Finally the call came that they were ready and we stood beside our son holding his hands and fighting our tears. Just before they were about to take him one of the doctors, the anesthesiologist, approached us and in a very cold matter of fact way told us that she thought his blood was not right for this operation at this time and that she had advised that the surgery not take place that evening. In her opinion, his chance of survival was lowered, but she had been overruled and the operation would take place as planned. At that point I was stunned with the callousness of this conversation. What good did this knowledge serve? The operation was going forward. Here we were ragged with worry and this woman was telling us that she would not go through with it despite the fact that we had already signed the consent forms and that the team had decided to go forward. Both Madeleine and I knew that Connor’s chance of survival was directly dependent on the speed of the surgery and had to bear the anesthesiologist's warning without argument or comment. With the warning fresh in our minds, we watched as our son disappeared behind the security doors to the surgical auditorium, the time was seven PM. So began the longest wait of our lives as we returned to our room to wait for the surgeon’s phone call. By seven thirty that evening Madeleine’s whole family arrived and we all crowded into our post-partum room. The mood was as light as it could be considering the circumstances and the conversation served as a distraction from the fear that everyone of us felt but dared not to talk about. By eight thirty we were alone. We didn’t say very much; we sat very close to one another and let the TV pass the time. We tried to put Connor’s operation out of our minds and neither of us wanted to look at the telephone, as we feared that it would ring before the four-hour mark which meant certain bad news. Time moved very slowly and the closer we got to eleven the better our chances were. The TV ceased to be any comfort so Madeleine and I lay on the bed holding onto one other praying for our son’s survival. At eleven thirty the phone rang and I picked it up with as much bravery as I could muster. The voice on the other end was the surgical nurse who told us that we should come and speak with the surgeon. I asked how the operation had gone but she simply asked us to come immediately to speak with the doctors. As we walked through the halls the hospital was very quiet. There was nothing left to say, there were no more distractions, only our footsteps echoed in the corridor as we inched closer to the reality which was our son’s fate.
We met one of the surgeons on the Neo-natal floor and she asked us to sit down. Dr. Santos was still dressed in her surgical greens, clogs, and hat. She was serious and professional. She began to explain that Connor had been stable through the whole procedure and that it went reasonably well. Due to the tightness of the operation she explained that Connor’s spleen had been damaged and that the reason for the extended time in the operating room was the result of his massive blood loss: He had lost almost half of his blood volume. The head surgeon, Dr. Lau, decided he would try to repair the spleen rather than simply remove it. This took time and exceptional skill as the spleen is very fibrous and to attempt to suture it is like sewing a frayed rope. Dr. Santos told us that Dr. Lau had succeeded but we would have to wait and see if complications would develop. Nevertheless, the operation was marked as a success and our family had cleared one more obstacle in the race for Connor’s survival. After Dr. Santos finished her explanation we were allowed to visit our son. He was very bloated from the surgery and still paralyzed. The intern who would care for him that evening was a young, bright, and extremely confident young woman. When Connor went in for surgery she had volunteered to assist after listening to the anesthesiologist tell us that she would not have operated on him at that time. We never found out what this young doctor’s name was but we will never forget her. She had an air of authority and exuded confidence that gave her total command of the situation. She took the time to explain what all the machines were doing to keep Connor alive. She reassured us that she would do everything she could for our son. Leaving Connor with her seemed natural. Because of her we were able to sleep that evening and for that we are thankful. We knew that the first seven days after surgery where the most critical and that every minute Connor could put between himself and September 17 would improve his chances for survival.
The day after surgery Connor was X-rayed. His heart was pushed completely over to the right side of his chest and was compressing the right lung. We expected this and we also expected that over time the heart would move back to its natural position. We were pleased to learn that he also had a small bud of a left lung which could grow over time; we had thought that one lung was the best we could hope for. Lung tissue continues to grow for the first five to eight years of life so, though not life sustaining now, the left lung could become useful to Connor later on. Overall we were pleased with the situation: He was alive and stable and he had lung tissue. We had cleared another hurdle. Seven days had passed and Connor remained stable. With that milestone behind us the next target was to reduce Connor’s oxygen requirements, reduce the pressures on his ventilator, and then hopefully remove his breathing aids. We were told that this could take up to a year to accomplish but that time horizon was too great to fathom at the moment. There was also the possibility that Connor’s lung would not be able to sustain him and that we would have to shut the machines off. The thought of such a decision was sickening and for sanity’s sake neither of us could go that far into the future so rather than look out at the horizon we focused on what was happening in minutes and let the days take care of themselves. Dr. White was the head neonatologist in charge of Connor and he was optimistic about his recovery. The oxygen and ventilation pressures required to keep Connor alive were steadily going down and the carbon dioxide levels in Connor’s blood were approaching normal levels. Testing these levels is done by what the hospital calls “taking a blood gas” which requires drawing blood from the patient. Dr. White decided that it was time for Connor to start moving and ordered the stoppage of the paralysis drug. Within hours Connor started to make tiny movements. We stood over him watching him with the utmost fascination. Soon, he was opening his eyes and we would stare at one another. Watching him lying there, despite all the tubes, he was the most beautiful thing I had ever seen and to see him start moving was reassuring.
It was very important to monitor his blood gas levels and in those first few hours of consciousness we were present when they came to draw blood. I slipped my baby finger into his tiny hand as the only form of comfort I could offer. He looked deep into my eyes with a natural sense of knowing that something was wrong as the technician cleaned the heal of Connor’s foot in preparation for taking blood. I could barely watch as the technician lifted the scalpel to make the incision. Connor squeezed my finger in fear as the cold steel touched his skin. I felt as though I was being cut. Connor began to cry but the ventilator prohibited any sound. It was the most tragic scene I had ever witnessed and I wept at my helplessness to hold or comfort him.
The IWK encourages visitation. We have lots of family and friends who want to help us. They showed their support by coming to the hospital and we would bring them to see Connor. There were some that could not bring themselves to see him and this I understand. Those who did come were caught off guard by the fragile life that lay before them. Most cried. But most importantly, everyone gained a greater appreciation for his or her own lives. There were many visitors and this became tiring for Madeleine. On a Sunday evening just ten days after surgery Connor’s condition began to deteriorate. For about four hours his life was once again in immediate jeopardy. We never found out what happened that night but we certainly analyzed every possible variable. One of the nurses pointed out that perhaps Connor was getting too much contact. With that we stopped the visitation, as it was the only variable we could control. Connor's condition began to improve. One day after work I came into the nursery like I always did and Paivey met me in the corridor and she was excited. She explained that they had taken another x-ray of Connors lungs and something amazing had happened. She brought me over to the viewing board and put the negative up to the light. Connor had grown a left lung! On the screen before me I could see that a lung now occupied the once almost vacant left cavity of Connor’s chest. Paivey said that this was like a foundation for a house. The lung tissue had taken the space but would most certainly be built upon to help sustain Connor’s life.
Our lives took on a routine. Madeleine would spend her days at the hospital and I would come at the end of the workday. Connor's condition was making gradual improvements but still no one would tell us if he was going to live. People would always ask how we were, how the baby was doing and whether we had held our son yet. The last question was the hardest for Madeleine to bear. For in the three weeks since Connor had been born she had yet been able to hold him.
We had left the hospital one evening to go home for dinner and when we were preparing to return we called as we always did to speak to the nurse who would be changing shifts with the night staff. We were able to talk to the nurse coming on that evening and it was Sheila one of Connor’s primary care nurses. She told us that the day had gone well and that Connor was OK, she ended the call by telling Madeleine that she had a surprise for her. During the 15-minute drive to the hospital Madeleine wondered at what she could have meant. After we washed up and put on our gowns to enter the neo-natal unit, we turned the corner to our son’s crib and Sheila met us. She put her hand on Madeleine’s shoulder and said that it was time that Connor deserved a cuddle: Madeleine was going to get to hold him! It was as if Madeleine stopped breathing. Her body began to shake with the relief of a great weight being lifted from her. She just cried. Sheila held her and cried with her. I watched through my own tears as Madeleine was seated in the rocking chair beside our son’s bed and our little boy was lifted cautiously with all the tubes still attached to him into his mother’s arms for the first time. Besides my first glimpse of our son, this was the most powerful moment I have ever witnessed. Mother and child finally united in the simplest gesture of love. Madeleine and I are accustomed to working for what we have. We tend to be positive and optimistic. I set the goal of having Connor home by Christmas, which in the opinion of the nurses was very optimistic. Madeleine wanted him home by Remembrance Day, November 11. Just five weeks after Connor’s birth the day came when the doctors removed the ventilator. Madeleine and I watched and prayed as they pulled the hoses from his mouth. Within seconds the procedure was complete and our son was breathing on his own with no extra oxygen and no assistance. He had overcome a huge barrier to his survival and we rejoiced at his first unassisted breath. The ventilator hose had been in so long that Connor did not know how to make any sound. His first cry was so faint that it sounded like a sigh. At last our angel had found his voice. Connor began making rapid progress and everyone’s optimism was in full force. Due to the ventilator hoses Connor had to take his food through I.V.. Subsequently, he did not know how to eat when the tubes came out. Madeleine had been breast pumping since Connor was born which was a tremendous effort in itself. She knew that our son would need every advantage we could give him and she would not deny him his mother’s milk. When the I.V. was removed, Connor was fed solely by a gastric-nasal tube which went though his nose and into his stomach. If we were going to take him home we had to learn how to insert and remove the tube and how to give him his milk. I never would have thought that I could do this to anyone but when it is your own child and it means bringing him home early you learn rapidly. Soon Madeleine and I had proven to the hospital staff that we were proficient in the task of feeding him and the days to his release were rapidly disappearing. Anyone who knows my wife will tell you that she is fiercely determined when she sets a goal and she would not have Connor in the hospital if there was any chance that we could bring home early and she pushed the doctors for reasons why he had to stay. Finally, the neo-natal team agreed that he did not have to be in the hospital any longer. On October 31, 1998 Connor came home.
The battle in feeding him was immense as he did not want to take a bottle for any real amount of milk. So, we had to go back to the tube. However, if we relied on the tube he ran the risk of growing dependent on it for many years. Thus, ensued a battle of wills between mother and child and often I would come home to find Madeleine crying with our son in her arms because he would not drink. The weeks were long and hard but at Christmas we took the tube out for good. Connor has not been a good eater but, through a lot of work and game playing we have been able to get him his nourishment through conventional means.
Connor is now eight months old and since he learned how to feed himself with a bottle he has been eating like a little horse. So far, there have been no signs of ill effects of the drama that unfolded only months ago. There is still the possibility that he may develop lung problems like asthma or bronchitis but these are manageable problems, assuming they ever appear. Madeleine and I are still very precautions with Connor’s health but this is starting to ease. As Connor grows, it is easy to forget what he went through because all we see now is a healthy little boy who is always smiling.
It is an early spring day and Madeleine is at the grocery store. I am holding Connor and he begins to rub his eyes. Gently I lie back on the couch and rest his head on my chest, hoping he will fall asleep. He is restless. I gently rub his back and sing lightly to him, he relaxes and drifts off to sleep. The sun is shining on us and it warms us like a blanket. This is my favorite time. I love sleeping with him like this. It makes me feel whole. I am totally relaxed and my mind drifts back to one year ago today when Madeleine and I came to know diaphragmatic hernia. The time has gone so quickly and it seems we are winning the race that started so abruptly last April. I start to think of all the people who prayed for Connor, of the constant support from our families, of finding the dinners my brother and sister in-law made for us on countless nights when we came home from the hospital, and of our friends who were always supportive and sensitive enough not to ask too much. And I think of my wife whose courage and strength is largely responsible for Connor’s success. I think of how lucky we are to live in Halifax with the IWK as one of the best children’s hospitals in the world. I think how lucky we are that we live in this time. And I am thankful for everything. Sleep has almost taken me and my last thoughts before slipping from consciousness are that of the fun I will have with Connor as we grow together. I wonder what he will be like years from now. I look forward to finding out.
Written by Connor's dad, Chris Myers (Canada)
1999
After the first trimester we are getting ready for the first ultrasound. I had to be in Europe but delayed the trip a day so that I wouldn’t miss the event. We were led into the Ultra Sound (US) room by a very nice middle aged woman who looked at us with the approving joy of an experienced mother. As we watched I felt a bit insignificant compared to the miracle that I saw before me on the black and white screen as a tiny new life waved at me from my wife’s belly. Madeleine looked at me with a happiness I had never seen before as we stared in awe at the miracle of life that rolled playfully before us.
Then, came a knock at the door and in entered the radiologist. She was slight of build with a school-girl pony tail. Her smile was very kind and her manner was light as she skillfully took control of the US machine. My wife and I watched once again as our child played hide and seek on the screen before us. Neither of us really noticed the soft determined conversation of the technician and the radiologist; our happiness was blinding. However, vision became all to clear with the cruel invasion of the words that fell from the doctor’s mouth like a weight all to heavy to bear, “there is a problem...”.
At that moment it was like I was outside of my own body looking in on drama which I could not escape. I watched my wife’s eyes well with sadness as the doctor explained that our baby had a diaphragmatic hernia and this meant certain surgery and that the odds were not good. I wanted to cry. My grip tightened on Madeleine’s arm. The technician and doctor left us alone in the US room to gather our composure. As the door closed the silence surrounded us and the gravity of our baby’s condition pulled us together and both of us shook with sorrow and disbelief. We cried.
Leaving the US room was very hard as we had to go through the reception area that was full of joyous expectant mothers. I could sense their fear as they steeled glances at us; our sorrow was too great to disguise from them. They began to feel doubt about their own pregnancies and this amplified our pain. We wanted to run.
Regular life stopped the second we were delivered the revelation of our baby’s impending battle to survive. The gleam of our achievements disappeared as their significance were washed over by the tide of our sadness. Both my wife and I have never taken our families for granted and have openly proclaimed many times that family is the most important thing that anyone has: Tragedy crystallized this vision and we instinctively went to our family.
I telephoned my mother-in-law and told her what had happened as best I could. I could barely get it out as the emotion choked my throat. She began to cry and through her staggered breath she told us to come home. And that is were we ran.
My wife’s parents live about an hour and half drive from Halifax on the eastern shore of Nova Scotia. Their house overlooks a cove that is sheltered from the pounding open ocean by a small tree covered island. It is a place were you feel welcome, warm and safe. We have often gone there to heal and now we find ourselves looking for its powers to help us through what has become the worst thing that has ever confronted us as a couple.
Grief soon turned to action. Madeleine and I searched the internet for any information we could get. What we found was not encouraging. Fetal diaphragmatic hernia only occurs once in five thousand births. The infant mortality rate is high with a 40% survival rate and possible further complications for the child in the event of a successful surgery. The process of gathering information hardened us somewhat to the cold reality of fighting against the odds. We have an appointment with the pediatric surgeon next week to discuss our situation and at least we will be able to ask some semi-informed questions. My wife then had to endure a battery of tests to see if there was anything else wrong with the child. This had opened up another dark closet of fears to which we both had tightly closed our minds’ eyes.
We had a few days before our meeting with the specialist and the time went very slowly as waiting without information is a hard thing to endure. We walked long through the woods. There was ice on the ground and we negotiated it with care, but my wife lost her footing and fell lightly to the ground. No damage done. As I helped her up she looked deep into my eyes and told me she was sorry. The moment held as our eyes remain fixed. I felt it first in her shoulders as I held her trying to fight the sadness that was quickly taking her. Her eyes suddenly become overwhelmed with tears and her body shook as I pulled her close to me. We clung to each other trying to find shelter in one another.
I know in the back of Madeleine’s mind she was wondering if she has done something wrong that has caused this. That is why she told me she was sorry. Although all reason would contradict such a foolish conclusion when we did everything recommended to ensure a healthy pregnancy. Yet, I don’t think that a man will ever be able to understand the connection that a woman develops with the life that grows inside her
Finally we descend through the tree line and are overtaken by the beach and its rustic beauty. This is a special place. The beach is like a snapshot from time as it has not yet fully developed to sand. There are no jagged stones just mounds of smooth rocks crafted by the tide into pieces of art, like millions of polished spheres heaped carelessly in the cove. We could feel the energy of this place as we sat silently looking upon the ocean’s horizon. The sound of the sea at work on the rocks was soothing. I held my wife in my arms and we both knew then that if we learnt next week that our child has a fighting chance we would take it. We also knew that if this was not meant to be we would survive even though a precious piece of us would be gone forever.
At five thirty in the morning on September 15, 1997 Madeleine and I woke from a fitful sleep to prepare to meet our unborn child. Through the past months we had wrestled with the knowledge that our baby was battling for survival in Madeleine’s belly against the demon we had come to know as diaphragmatic hernia. Our pregnancy lasting to full term was a miracle in itself. In the womb the baby’s heart is under tremendous pressure from the misplaced organs and heart failure is the greatest threat. We were told early that our child’s chances would increase as we passed milestones and making it to thirty-nine weeks was our baby’s first hurdle in a long race for survival.
We arrived at the IWK Grace Hospital in Halifax at seven in the morning for a scheduled induction. The doctors had determined that it was much better for everyone that our child be born in a controlled environment. After a few hours of administration and tests the doctors were ready: Madeleine started her I.V. of oxytocin at ten thirty that morning and her first contraction came at ten thirty five.
Our nurse, Maria, was tremendous. She helped us through the labor with outstanding competence and care. As Madeleine’s contractions became more frequent and intense my heart sank with the helplessness of watching the woman I love in such pain. I watched as her body tensed in bold confrontation with the mysterious tempest that exploded inside of her. The waves of this pain became more frequent until they were no more than ten seconds apart. Madeleine was crying for relief as I tried to comfort her but my words seemed strangely out of context. Madeleine was focusing her strength and Maria was watching, knowing, helping. I watched like an outsider to an ancient rite.
At two that afternoon we could see the top of our baby’s head. With this the warning was sounded and the neo-natal team assembled in our room ready to save our child from the certain suffocation that waited when our baby would try to sustain life with one small lung. Our delivery room was full when Anne, our family doctor, asked Madeleine to start pushing. At this stage Maria ran the show. She guided Madeleine through the delivery instructing when to push and when to relax, Maria had done this many times and her confidence made us feel comfortable in spite of the looming audience of medical staff watching from only a few feet away.
Shortly after three o’clock the baby’s head was nearly out. I watched in fascination as suddenly, after one great push, our baby slid into Ann’s arms. At that moment I was able to forget about all that was going on around us. All the worry and fear were blinded by an uncontrollable flash of pride as I looked upon my son. For that instant I was like any other father who meets their child for the first time: At seventeen minutes past three on September 15, 1997 I was bound to my child, Connor Alexander Myers, forever. Time, however, quickly started again.
The neo-natal team took Connor to the other side of the delivery room and immediately started working to save his life. Connor needed to be artificially ventilated if he was going to survive. I held Madeleine’s hand as she lay on the bed. I tried to make her feel comfortable, as I would steel glances at the team working across the room. I looked at Madeleine as reassuringly as possible but I could sense the tension surrounding our baby. It was hard to discern what was happening with the collection of steely poker faces working on our son except for a brief instant when I met the eyes of the senior resident.
Paivy (pronounced “pie-v”) is a lovely young Finnish woman in her third year as resident in pediatrics. She had met with us earlier in the day to review our case. Paivy is the type of person that you instantly like, the type of person you instantly trust. During our brief connection I knew that Connor was in jeopardy. The knowledge was so disheartening that the only thing that prevented me from crying was the pain I knew Madeleine would feel if she sensed I was distressed. The emotion was still too weighty for me to look directly into her eyes, as I knew she would immediately see my soul crying for our son. So I held her.
The minutes crept forward; the scene was surreal. After what seemed to be seconds shy of eternity Dr. White, the Neonatologist, stood up and dispelled the darkness in the room with the words “he’s stable". He was kind enough to wheel the small heating table on which he had saved our son’s life over to us so Madeleine could hold Connor’s hand. We both cried the instant she touched him. That brief connection of flesh made us a family. When they had to take Connor away the fabric of our collective soul ripped and we both were choked by the possibility that it may never be mended. Madeleine needed time to settle from the rigors of birth and our angel Maria guided her to the best level of physical comfort that can be expected after such an ordeal. The pain of birth was insignificant to the emotional pain that a mother feels when her child is in danger. Madeleine bore the weight of our family’s suffering like Christ’s cross and the gravity of her distress was crippling to both of us.
Within hours we were able to see our son again. When the automatic doors to the intensive care unit opened we passed the threshold into another world. We had visited the unit months before and the emotions it created in anticipation of this day were suffocating. The pain felt then was amplified by the cold reality of seeing our child in intensive care. Connor lay with his arms stretched out from his sides. His face was obscured by the ventilation hose, which went deep into his body. The myriad tubes and machines hummed and beeped in unison. At the center was a beautiful little boy playing bandleader to the strange orchestra of machines which sustained his fragile life. He was heavily drugged and immobilized. We held his hands and wept.
That evening our family came. The IWK supports family involvement and we were allowed to bring them in twos to see our son. As we approached the nursery a doctor met us. Madeleine did not yet have the strength to stand so I was behind her pushing the wheelchair. In clusters our family stood behind us in disbelief as the doctor began to tell us that Connor’s condition had deteriorated. Madeleine shook from grief under my hands as he methodically described the setback. Already stunned from the day the words punched us both and we took it without defense. He described that the first few hours of stability after birth were merely the “honeymoon” and that Connor had become unstable and nearly died. Just seconds before our arrival, this doctor had saved our child’s life but the price of survival was exacting a high tax on Connor’s small fragile lung. His instability made the chances of early surgery unlikely and our hopes deflated.
Later, after we left the nursery and our family had gone, Madeleine and I were alone in our room for the first time that day. Both of us were exhausted. The day’s events had taken its toll on Madeleine. Her bright features were dulled by the cloud of uncertainty that Connor’s instability had created. At around midnight she insisted that before we tried to sleep we had to go back to the nursery. She told me she needed to kiss him. At first, in almost delirium, I saw this as a source of additional strain for both of us and cautioned against it. Madeleine started to cry and then the revelation struck me: She was thinking that if our baby died that night she would never have kissed him. When we returned to the nursery it was very quiet. The activity that was buzzing in the place earlier that evening had settled down and the world seemed to be resting. We approached Connor to find that he too had settled with his surroundings and that he was stable the price of which was not nearly as high as it was only hours earlier. Both of us kissed his hands and smiled upon him, able to look past the tubes to see our son. I told Madeleine that no matter what would happen I would not regret our decision. In the space of only a few hours on this earth our son had added strength to the existing solid bonds of our family. He summoned a love from within us that I had never felt before. He had changed our lives for the better when he was in the womb and he continued to do so every second he was on the earth. This little boy had already given so much I prayed that we would be given the opportunity to give something back to him. The surgical team had set a tentative surgery time for Saturday that week. However, Connor had remained stable since his setback and they decided to operate on Wednesday, September 17 at five in the evening. Pushing up the surgery was a good thing for Connor as it would allow him to get past the necessary trauma of rearranging his organs and get on with the healing process. Surgery, of course, not only offers hope it creates fear.
On the day of surgery our family priest, Reverend Wayne Lynch, called me to see how Madeleine and I were doing. I knew that he would like to baptize Connor but would not ask to do it. I am not an overly religious man in the organized sense but I could see no harm in Connor’s baptism. In fact, if God would take a hand in saving my child I would gladly accept the help at any cost. Wayne arrived that afternoon and he, Madeleine, and I stood over Connor as Wayne anointed him with water and prayed for him. Connor lay still before us. Watching Wayne place his hand on my son’s tiny forehead brought me back to a scene many years ago when Wayne did the same thing to my grandfather before his heart surgery. The emotion was overwhelming as I remembered the pain of losing my grandfather and now I was reliving the scene with my own son who had not yet had a chance to live. For some reason I refused to cry. Madeleine wept in my arms, our sadness was immense.
Shortly before five we watched as the neo-natal team prepared Connor for transport to surgery. Twice the word came that the surgery time had been pushed back and they would have to reconnect his life support to main power. Madeleine and I tried to encourage one another with faces of bravery but the pain was too much to conceal. Finally the call came that they were ready and we stood beside our son holding his hands and fighting our tears. Just before they were about to take him one of the doctors, the anesthesiologist, approached us and in a very cold matter of fact way told us that she thought his blood was not right for this operation at this time and that she had advised that the surgery not take place that evening. In her opinion, his chance of survival was lowered, but she had been overruled and the operation would take place as planned. At that point I was stunned with the callousness of this conversation. What good did this knowledge serve? The operation was going forward. Here we were ragged with worry and this woman was telling us that she would not go through with it despite the fact that we had already signed the consent forms and that the team had decided to go forward. Both Madeleine and I knew that Connor’s chance of survival was directly dependent on the speed of the surgery and had to bear the anesthesiologist's warning without argument or comment. With the warning fresh in our minds, we watched as our son disappeared behind the security doors to the surgical auditorium, the time was seven PM. So began the longest wait of our lives as we returned to our room to wait for the surgeon’s phone call. By seven thirty that evening Madeleine’s whole family arrived and we all crowded into our post-partum room. The mood was as light as it could be considering the circumstances and the conversation served as a distraction from the fear that everyone of us felt but dared not to talk about. By eight thirty we were alone. We didn’t say very much; we sat very close to one another and let the TV pass the time. We tried to put Connor’s operation out of our minds and neither of us wanted to look at the telephone, as we feared that it would ring before the four-hour mark which meant certain bad news. Time moved very slowly and the closer we got to eleven the better our chances were. The TV ceased to be any comfort so Madeleine and I lay on the bed holding onto one other praying for our son’s survival. At eleven thirty the phone rang and I picked it up with as much bravery as I could muster. The voice on the other end was the surgical nurse who told us that we should come and speak with the surgeon. I asked how the operation had gone but she simply asked us to come immediately to speak with the doctors. As we walked through the halls the hospital was very quiet. There was nothing left to say, there were no more distractions, only our footsteps echoed in the corridor as we inched closer to the reality which was our son’s fate.
We met one of the surgeons on the Neo-natal floor and she asked us to sit down. Dr. Santos was still dressed in her surgical greens, clogs, and hat. She was serious and professional. She began to explain that Connor had been stable through the whole procedure and that it went reasonably well. Due to the tightness of the operation she explained that Connor’s spleen had been damaged and that the reason for the extended time in the operating room was the result of his massive blood loss: He had lost almost half of his blood volume. The head surgeon, Dr. Lau, decided he would try to repair the spleen rather than simply remove it. This took time and exceptional skill as the spleen is very fibrous and to attempt to suture it is like sewing a frayed rope. Dr. Santos told us that Dr. Lau had succeeded but we would have to wait and see if complications would develop. Nevertheless, the operation was marked as a success and our family had cleared one more obstacle in the race for Connor’s survival. After Dr. Santos finished her explanation we were allowed to visit our son. He was very bloated from the surgery and still paralyzed. The intern who would care for him that evening was a young, bright, and extremely confident young woman. When Connor went in for surgery she had volunteered to assist after listening to the anesthesiologist tell us that she would not have operated on him at that time. We never found out what this young doctor’s name was but we will never forget her. She had an air of authority and exuded confidence that gave her total command of the situation. She took the time to explain what all the machines were doing to keep Connor alive. She reassured us that she would do everything she could for our son. Leaving Connor with her seemed natural. Because of her we were able to sleep that evening and for that we are thankful. We knew that the first seven days after surgery where the most critical and that every minute Connor could put between himself and September 17 would improve his chances for survival.
The day after surgery Connor was X-rayed. His heart was pushed completely over to the right side of his chest and was compressing the right lung. We expected this and we also expected that over time the heart would move back to its natural position. We were pleased to learn that he also had a small bud of a left lung which could grow over time; we had thought that one lung was the best we could hope for. Lung tissue continues to grow for the first five to eight years of life so, though not life sustaining now, the left lung could become useful to Connor later on. Overall we were pleased with the situation: He was alive and stable and he had lung tissue. We had cleared another hurdle. Seven days had passed and Connor remained stable. With that milestone behind us the next target was to reduce Connor’s oxygen requirements, reduce the pressures on his ventilator, and then hopefully remove his breathing aids. We were told that this could take up to a year to accomplish but that time horizon was too great to fathom at the moment. There was also the possibility that Connor’s lung would not be able to sustain him and that we would have to shut the machines off. The thought of such a decision was sickening and for sanity’s sake neither of us could go that far into the future so rather than look out at the horizon we focused on what was happening in minutes and let the days take care of themselves. Dr. White was the head neonatologist in charge of Connor and he was optimistic about his recovery. The oxygen and ventilation pressures required to keep Connor alive were steadily going down and the carbon dioxide levels in Connor’s blood were approaching normal levels. Testing these levels is done by what the hospital calls “taking a blood gas” which requires drawing blood from the patient. Dr. White decided that it was time for Connor to start moving and ordered the stoppage of the paralysis drug. Within hours Connor started to make tiny movements. We stood over him watching him with the utmost fascination. Soon, he was opening his eyes and we would stare at one another. Watching him lying there, despite all the tubes, he was the most beautiful thing I had ever seen and to see him start moving was reassuring.
It was very important to monitor his blood gas levels and in those first few hours of consciousness we were present when they came to draw blood. I slipped my baby finger into his tiny hand as the only form of comfort I could offer. He looked deep into my eyes with a natural sense of knowing that something was wrong as the technician cleaned the heal of Connor’s foot in preparation for taking blood. I could barely watch as the technician lifted the scalpel to make the incision. Connor squeezed my finger in fear as the cold steel touched his skin. I felt as though I was being cut. Connor began to cry but the ventilator prohibited any sound. It was the most tragic scene I had ever witnessed and I wept at my helplessness to hold or comfort him.
The IWK encourages visitation. We have lots of family and friends who want to help us. They showed their support by coming to the hospital and we would bring them to see Connor. There were some that could not bring themselves to see him and this I understand. Those who did come were caught off guard by the fragile life that lay before them. Most cried. But most importantly, everyone gained a greater appreciation for his or her own lives. There were many visitors and this became tiring for Madeleine. On a Sunday evening just ten days after surgery Connor’s condition began to deteriorate. For about four hours his life was once again in immediate jeopardy. We never found out what happened that night but we certainly analyzed every possible variable. One of the nurses pointed out that perhaps Connor was getting too much contact. With that we stopped the visitation, as it was the only variable we could control. Connor's condition began to improve. One day after work I came into the nursery like I always did and Paivey met me in the corridor and she was excited. She explained that they had taken another x-ray of Connors lungs and something amazing had happened. She brought me over to the viewing board and put the negative up to the light. Connor had grown a left lung! On the screen before me I could see that a lung now occupied the once almost vacant left cavity of Connor’s chest. Paivey said that this was like a foundation for a house. The lung tissue had taken the space but would most certainly be built upon to help sustain Connor’s life.
Our lives took on a routine. Madeleine would spend her days at the hospital and I would come at the end of the workday. Connor's condition was making gradual improvements but still no one would tell us if he was going to live. People would always ask how we were, how the baby was doing and whether we had held our son yet. The last question was the hardest for Madeleine to bear. For in the three weeks since Connor had been born she had yet been able to hold him.
We had left the hospital one evening to go home for dinner and when we were preparing to return we called as we always did to speak to the nurse who would be changing shifts with the night staff. We were able to talk to the nurse coming on that evening and it was Sheila one of Connor’s primary care nurses. She told us that the day had gone well and that Connor was OK, she ended the call by telling Madeleine that she had a surprise for her. During the 15-minute drive to the hospital Madeleine wondered at what she could have meant. After we washed up and put on our gowns to enter the neo-natal unit, we turned the corner to our son’s crib and Sheila met us. She put her hand on Madeleine’s shoulder and said that it was time that Connor deserved a cuddle: Madeleine was going to get to hold him! It was as if Madeleine stopped breathing. Her body began to shake with the relief of a great weight being lifted from her. She just cried. Sheila held her and cried with her. I watched through my own tears as Madeleine was seated in the rocking chair beside our son’s bed and our little boy was lifted cautiously with all the tubes still attached to him into his mother’s arms for the first time. Besides my first glimpse of our son, this was the most powerful moment I have ever witnessed. Mother and child finally united in the simplest gesture of love. Madeleine and I are accustomed to working for what we have. We tend to be positive and optimistic. I set the goal of having Connor home by Christmas, which in the opinion of the nurses was very optimistic. Madeleine wanted him home by Remembrance Day, November 11. Just five weeks after Connor’s birth the day came when the doctors removed the ventilator. Madeleine and I watched and prayed as they pulled the hoses from his mouth. Within seconds the procedure was complete and our son was breathing on his own with no extra oxygen and no assistance. He had overcome a huge barrier to his survival and we rejoiced at his first unassisted breath. The ventilator hose had been in so long that Connor did not know how to make any sound. His first cry was so faint that it sounded like a sigh. At last our angel had found his voice. Connor began making rapid progress and everyone’s optimism was in full force. Due to the ventilator hoses Connor had to take his food through I.V.. Subsequently, he did not know how to eat when the tubes came out. Madeleine had been breast pumping since Connor was born which was a tremendous effort in itself. She knew that our son would need every advantage we could give him and she would not deny him his mother’s milk. When the I.V. was removed, Connor was fed solely by a gastric-nasal tube which went though his nose and into his stomach. If we were going to take him home we had to learn how to insert and remove the tube and how to give him his milk. I never would have thought that I could do this to anyone but when it is your own child and it means bringing him home early you learn rapidly. Soon Madeleine and I had proven to the hospital staff that we were proficient in the task of feeding him and the days to his release were rapidly disappearing. Anyone who knows my wife will tell you that she is fiercely determined when she sets a goal and she would not have Connor in the hospital if there was any chance that we could bring home early and she pushed the doctors for reasons why he had to stay. Finally, the neo-natal team agreed that he did not have to be in the hospital any longer. On October 31, 1998 Connor came home.
The battle in feeding him was immense as he did not want to take a bottle for any real amount of milk. So, we had to go back to the tube. However, if we relied on the tube he ran the risk of growing dependent on it for many years. Thus, ensued a battle of wills between mother and child and often I would come home to find Madeleine crying with our son in her arms because he would not drink. The weeks were long and hard but at Christmas we took the tube out for good. Connor has not been a good eater but, through a lot of work and game playing we have been able to get him his nourishment through conventional means.
Connor is now eight months old and since he learned how to feed himself with a bottle he has been eating like a little horse. So far, there have been no signs of ill effects of the drama that unfolded only months ago. There is still the possibility that he may develop lung problems like asthma or bronchitis but these are manageable problems, assuming they ever appear. Madeleine and I are still very precautions with Connor’s health but this is starting to ease. As Connor grows, it is easy to forget what he went through because all we see now is a healthy little boy who is always smiling.
It is an early spring day and Madeleine is at the grocery store. I am holding Connor and he begins to rub his eyes. Gently I lie back on the couch and rest his head on my chest, hoping he will fall asleep. He is restless. I gently rub his back and sing lightly to him, he relaxes and drifts off to sleep. The sun is shining on us and it warms us like a blanket. This is my favorite time. I love sleeping with him like this. It makes me feel whole. I am totally relaxed and my mind drifts back to one year ago today when Madeleine and I came to know diaphragmatic hernia. The time has gone so quickly and it seems we are winning the race that started so abruptly last April. I start to think of all the people who prayed for Connor, of the constant support from our families, of finding the dinners my brother and sister in-law made for us on countless nights when we came home from the hospital, and of our friends who were always supportive and sensitive enough not to ask too much. And I think of my wife whose courage and strength is largely responsible for Connor’s success. I think of how lucky we are to live in Halifax with the IWK as one of the best children’s hospitals in the world. I think how lucky we are that we live in this time. And I am thankful for everything. Sleep has almost taken me and my last thoughts before slipping from consciousness are that of the fun I will have with Connor as we grow together. I wonder what he will be like years from now. I look forward to finding out.
Written by Connor's dad, Chris Myers (Canada)
1999