It has only taken me thirteen years to write anything about our story. I can honestly say that I have perseverated about it endlessly, even thought about writing a book but I was always afraid I would end up like Jack Nicholson’s character on the “Shining,” you know, the one that locks himself in a room for months, and slowly goes crazy, writing the same line over and over again. So, out of fear of ending up like some variation of that, I didn’t write anything – until now.
We are thirteen years out from our original diagnosis. I was 23 weeks pregnant when I got blindsided by the news that there was no longer any amniotic fluid left, and that fluid is what the baby would need in order to have normal lung development. Having no amniotic fluid meant that he had little to know kidney function. The doctor’s examined his large, echo genetic (bright), cystic kidneys and told us “unfortunately he had the kind of kidney condition where babies typically don’t survive. I remember sliding down the dining room wall of my parent’s house; I had just been given news that shattered my world. For months, I was anticipating a beautiful, healthy baby. I had the nursery picked out, had bought beautiful baby clothes, picked out an amazing preschool; we even knew his name, it was Sam meaning “sun child” or “bright sun.” That would be the perfect name for him.
Because we had almost no amniotic fluid, we learned the baby would now be in jeopardy for additional complications, cord damage and disfigurement. The amniotic fluid not only develops the lungs but also keeps the baby floating in a way that prevents him from becoming disfigured from being pressed up against the uterine wall and from getting the umbilical cord wrapped around his neck. We already had been given way more information than we wanted now we had one more piece of extremely unsettling information. Now the uterus that once had kept my baby safe had become a weapon.
I was admitted to the hospital where I stayed for the remainder of my pregnancy. I would no longer be able to sleep in my bed or enjoy the comforts of home. I had a ten -year -old daughter who would have to live away from her mother for three months. I realized then that the situation was quickly becoming an ordeal that would impact everyone.
We arrived at the “prenatal suite,” what a joke of a name a name for something that really meant prison; we met with the specialist who would be giving us more in-depth information about our unborn son’s diagnosis. He explained, that from evidence on the ultrasound, Sam’s kidneys appeared to have a condition called poly-cystic kidney disease. Once again, was a condition that, when both kidneys are affected, offers little chance for survival. The more we learned, the grimmer things were became. I now began my sentence sitting in a hospital, staring at a blank wall, and dwelling on something that seemed horrifically inevitable.
It didn’t make sense, that I was checked into a hospital for three months to prepare for my son’s death. If anything, shouldn’t I have been checked into a mental facility?
I did bring one convenience of home, my laptop. It became my companion and best friend for many weeks to come as I desperately searched for the answers I needed about my son’s illness. I remember feeling so helpless. This was my baby and there was nothing I could do to help him. I was already a failure as a mother and he hadn’t even been born yet. A mother is supposed to protect her children and keep them safe and I could do neither. Some days I felt almost as if I, myself, handed Sam the disease.
I stopped calling Sam “the baby” after we received the news of his condition. I guess I thought if I could personalize him, he would have a better chance of survival. Either way, I couldn’t give up on my baby. I kept digging until I found the information that would ease my mind. After weeks or researching and joining every medical forum and reading every journal article, I finally was given some hope. It turned out that it is not necessarily the kidneys that kill the child but the lungs. If there is enough lung development to sustain life, than the baby had a good chance of survival. This is where my first debate with the doctors took place – one of many to come. You see when you have a child with a chronic illness you end up being the case manager, by default. Too often, you have to micromanage every diagnosis and detail of the child’s treatment plan. I know this makes me sound like an obsessive-compulsive personality type, but it is true. I have heard many other parents of children with chronic illness say the same.
As I write this story, I can feel fatigue set in, equal to what I felt through the initial course of my son’s illness. It is as if you are in autopilot when you are in “the thick” of medical trauma; and you just keep on keeping on. After all, is there a choice? In some ways you stop being the mom – at least I did. It is like you are on an adrenalin rush and you aren’t going to stop until you child is safe. For us that would mean being in overdrive for a very long time.
Sam was born on September 4th, 2001. He was born full term at 39.5 weeks. The delivery itself was unremarkable, but Sam was born with Apgar scores, ranging from 2 to 3. These were signs of the baby’s initial health and these low numbers were not good news. They were the initial confirmation of all the horror stores we had heard and they meant his health and prognosis were poor. All my anxieties and fears were coming true. Any self-protective measure I used as armor, (mainly denial) had been stripped from me. I was forced to face, up close and personal that my son might not survive.
Sam was whisked away to the NICU where the team spent endless hours trying to properly ventilate him. His oxygen levels could not be stabilized and he had little kidney function left. We were on a serious emotional roller coaster -a horrible unmerciful thrill ride with unthinkable twists and turns. After hours of anxiety, fear and trepidation, my husband and I just needed a break . We knew that sleeping would be impossible, but we needed a rest. Anyway, sleeping wouldn’t allow me to control what was happening. It would feel too much like letting go.
I remember lying there hearing the alarms of the ventilators go off in my head – a symptom of PTSD, I suppose, but there wasn’t time to worry about my symptoms. I just had to be there for Sam. By this point there was no marker of time, no day of the week or month mattered. I had lost touch with the real world – even with my little daughter who in retrospect needed me just as much as Sam did. I never slept, I just stared at the ceiling – thinking, hoping and looking to my husband who at that time was my steady force;my rock. I would ask him a question and he would provide me whatever answer I needed in the moment so that I could feel better about what was happening to our son. The phone in our hospital room rang at 2:30 a.m. and I knew it wasn’t ringing at that hour because there was good news. My husband took the call because I could not. He listened but never really responded other than to say “ok” in a very quiet voice. My heart sank deeper than it ever had. My husband glanced over at me softly and said in a very quiet voice, “we need to go down.” I am not going to put words down here for the kind of feelings I was having in this moment. I don’t think there is any word in the English language that would adequately give it justice. I am not sure they make words to speak to the way a mother feels when she knows her son is dying. I walked very slowly, as slowly as I could to “the unit.” Maybe walking slowly would delay this nightmare somehow. As I looked through the glass doors, I didn’t know how was going to be able to face what was ahead of me. My baby had been separated from all the other babies. There were ugly clinical looking curtains surrounding his bassinet – I knew this was a terrible sign.
The doctors approached us made little eye contact; they almost appeared shamed. Maybe that is how I wanted them to feel. They told us that Sam’s oxygen level had remained at only thirty percent for the last three hours and that there was not anything they could do for him at that point. My beautiful little boy lay there with tubes sticking out of every part of his body. His face was dark blue and eyes were swollen shut. Before me was my beautiful little baby. He would never be held, never taste his bottle, never take a walk in the park, never celebrate his first birthday and never know the family that loved him. All I wanted to do was to pick him up, hold him and make him safe.
The doctors told us it might be best to go back to our room and rest. Again, there would be no sleep. I am not sure when there would ever be sleep again and I really didn’t care. As I lay down on my bed, I felt numb and empty. Why was this happening to us. What did we do to deserve this? I felt depressed and empty – so empty and more depressed than I had ever felt. The pain was truly indescribable…unbearable. I just wanted someone to tell me that none of this was really happening. It was all a really bad dream, one I just wanted to wake up from.
After a few hours of nothingness, we went back to where our son had been placed in isolation and prepared to say good-bye to him. My entire family and friends entered the unit. It was still only 5:30 am. A small wooden rocking chair was been placed by his bedside. I figured this meant I would finally get to hold Sam. We were asked permission to take Sam off his life support. How does a parent give permission and agree to end her child’s life? It was as if I was being asked to sign a permission slip for a field trip! The nurses said that we could each take a turn holding him and rocking him. One by one, my stepbrothers and sisters, friends, and parents rocked my little Sam. He didn’t seem to know it though. He still looked so stiff and so lifeless. The priest came in and asked if he could be baptized. I guess if he were going to live with God now, a baptism would be the right thing to do. I grew more and more dumb as I was asked a series of questions such as “would we like to donate Sam’s organs?” This is a question I never imagined hearing after the birth of a child. The intellectual side of me took over and I answer “Yes,” I would like him to be a donor. I figured this might be a way for him to live on in someone else. I am not sure in that moment if I was thinking about helping anyone else – I just wanted to hold on to a part of him.
It was my ten-year-old daughter’s turn to say good- bye to her baby brother. I still had not taken my turn as I watched my little girl. I had no idea what was going on inside of her. I could only imagine. I remember watching her as the tears rolled down her face. Somehow I managed to stay numb, yet I was aware of feeling like I couldn’t help either one of my children.
At that moment, most of us were more focused on Lilly than on Sam. Perhaps it was unbearable for us as a family to see Sam so incredibly lifeless. I think we all felt helpless. One of the nurses reached to adjust Sam on Lilly’s lap, and had a very strange reaction. A look of disbelief appeared on her face. And she said “Wait a minute. Do you see that his color looks better?” “Am I imagining this?’ He was quickly connected to a monitor – one that checks oxygen levels, and the number read 99 percent. I was afraid to believe that was true. I was afraid to hold to any false hope at this point. Was it my daughter’s presence – her warmth, her touch and her spirit that brought Sammy back? Was there such an amazing connection between these two that was more powerful than any medical intervention? We all have different religious ideas, but there wasn’t an explanation other than an intervention had taken place the morning of September 8th, 2001 which was nothing less than “Divine.” Our Sam was given a miracle – he was given a chance at life and I would forever be changed by a child.