tagNon-EroticThat Awful Moment

That Awful Moment



Please note that I am an aspiring author with a specific story to tell, of which this submission is a significant part. I greatly appreciate comments regarding style, composition, and similar related feedback as I am trying to hone (if not just plain develop) my writing skills.

The following is a true story from our life.


Some situations in life are nearly impossible to find words for, even much later after they are long passed. My wife and I both found ourselves in such a place early in the morning hours one day when we were walking down a somewhat dim-seeming but still well-lit clean, crisp hospital hallway as I held our infant son in my arms.

Our lives had changed a lot in the preceding 11 days, and we hadn't yet begun to realize just how much. Barbara was expecting our third child, our son, a baby brother for his two older sisters, Elizabeth, 11, and Christina, 3. The day of his birth arrived, right about on the originally scheduled date. Barbara's obstetrician had later pushed her expected due date back about 2 weeks because she didn't gain as much weight as soon as projected, but at the time nobody took this to be a clue of anything more serious, and all the normal diagnostics appeared to come back as expected.

Our son's birth was, if anything, easier than his sisters births because he was smaller than they were, and the birth process was otherwise unremarkable...not that I dismiss any of the trauma of a birth lightly, ladies. Having had several bouts of kidney stones myself, I have a really good clue about the pain and trauma that women endure during childbirth - and lest any of you ladies doubt the veracity of my statement, the nurse who admitted me to the hospital ward for my first kidney stone episode later told me that she'd done both childbirth and kidney stones too, and she'd volunteer for childbirth twenty times more before wanting to deal with another kidney stone! ...but I digress.

As I cut his umbilical cord, he gave a weak cry and was taken over to the nearby table to be evaluated and his Apgar scores determined. His initial scores were good. As the nurse was cleaning him up as I watched, hovering nearby, I was the first to notice his left hand. There was an extra partial digit on that hand attached to the right side of his left thumb. I mentioned it aloud. As the nurse confirmed my observation the doctor, who was working with my wife while sitting on his rolling stool, stopped his ministrations to her and quickly slid over towards the nurse and I. He took a brief peek at our son, and as he wheeled himself back to my wife, he said softly to the nurse assisting him to go get another doctor, the on-duty geneticist, to examine our son - and to do it pronto.

After a few very quick moments when we introduced our son to his mother, this time from the outside, and then he was swiftly swept away into the nursery unit so the doctors could give him a very careful and thorough exam. An hour or so later, he was brought back to us, and sometime later, the other doctor, the geneticist, came in to my wife's room to both observe him and her as Barbara was attempting to give him his first feeding, largely unsuccessfully. He just didn't seem to have the energy to nurse properly from her ample and experienced bosom.

The doctor told us the results of her examination of our son, who by then we had named Ryan William (there were no other Ryan's in the family on either side, and we prefer to hand down the middle names from our preceding generations, so like my father and I, William was handed down to our son as his middle name).

The doctor told us that any geneticist worth their salt knows the 2500 or so most typical mutations, genetic anomalies and syndromes on sight, and that Ryan was none of these. She went to say that the next 1500-2500 or so more common but less typical syndromes could, with some checking on their reference materials, be easily and quickly identified. But, Ryan was none of those either.

She went on to say that when babies are born, geneticists take a quick look at them, and expect to see those one or two minor differences that most people have - birthmarks, minor oddities and the like, and that when they see one or two of those little differences in a baby, they know they can usually quickly move on to another patient as nothing much is usually amiss.

However, once they see that third little thing that's different about a baby, they know to take a much closer look. She went on to list about 8 or 10 things about our little Ryan William that were clues to her that there was much more to his story. His birth weight and size were in the lower normal range, 5 lbs. 2 oz. at birth (a bit less after he pooped) and he was 18 inches long. By comparison, his sisters were both over 8 lbs. and over 21 inches in length, and all 3 were full term babies. She mentioned the extra digit on his left thumb as being highly unusual. Usually if extra digits were present they were extra fingers on the outer edge of the hand, or between the thumb and pointer finger, or between the pointer finger and middle fingers.

Ryan's root or origin point for the swirl pattern of the hair on his head was positioned farther around on the back of his head, rather than on the top as most "normal" people have it. His ears were a slightly low set and tilted back from the norm, both of which were separate points. His eyes were set wide, with a slightly wider bridge of the nose then is typical. She listed a few other things about Ryan too, like a significant muscular Antonia, or weakness of his musculature, but none of these things were severe or profoundly affected his appearance.

However, as far as being able to make a diagnosis about what his overall issues were, or what sort of syndrome he may fall under, she could make no definitive diagnosis. She simply said that he was a "special one", and that the next step would be to do a full chromosomal workup on him to see if they can get more clues about him from his genetic makeup directly.

For the immediate future, he would be kept on the neonatal ICU when he was not with Barbara for her attempts to nurse him, and we'd have to see how things went in the coming days beyond that. Barbara and I shared a few quiet moments after the doctor left, and we basically said to each other that we did not care what may be different or special about our son we were just going to love him just as we did his sisters. There was not even any significant thought given to any other course of action or different viewpoints from either of us. As far as we were concerned, God sent this little boy to us, and we were his parents, period. (We found out much later that this is not the way some people react in these kinds of situations, thoughts which deeply saddened us when we learned of the far too frequent and heartrending reality of those situations.)

In the next 24-48 hours as Barbara was released from the hospital, and I informed my boss about Ryan's condition, I was given one of the greatest blessings I could have ever received. My boss told me to go and be with my family and our son for as long as was needed, but to keep him informed, and that my job would be there when I came back. He even said I would be paid during that time too. I still say thanks to God for that wonderful man's attitude and actions in those days. He was both a prince and hero for us when we suddenly needed one very badly. We didn't even realize just how badly it would be right then, but he took the everyday worries of life off my plate for us at a time when we were too stunned by developments to put any normal perspective on things together. It would take quite a bit longer for me to do that for myself than I realized, and in some ways I continue working through that to this day.

In the next few days, Barbara had to pump her milk to feed to little Ryan because he could not sustain the effort to suckle from the tap long enough to take in enough nourishment. The nurses tried to bottle feed him with much the same results. They soon resorted to tube-feeding him via a nasal canula to properly hydrate and strengthen him.

On his second or third day, at night, one of the nurses picked up on a new symptom, and could not get a good pulse reading as his little heart was racing. They hooked him up to cardiac monitors, and were alarmed to find his heart would jump to periods of 270-290 beats per minute, and as they were preparing to intervene, medicate and treat him, it would spontaneously revert to a more normal 120-140 beats per minute pace. He did not seem to be in distress or discomfort when this happened. Barbara and I were both quite distressed - and more than just a bit shell-shocked by everything, but Ryan wasn't. His doctors wisely decided not to overreact or overmedicate or intervene until they got more information about his condition.

After observing these episodes of tachycardia for a half a day or so, they called in a pediatric cardiologist to take a much closer look. He came in a day or so later, and examined Ryan. The pediatric cardiologist had to take his time and then brought in a special pediatric cardiac echo machine and gave Ryan a very thorough cardiac workup. We arrived back in the hospital early that afternoon just as he was finishing up his exam of Ryan, and he said the ominous words which ring today with infamy for us: "We have to talk."

He said that Ryan had some severe cardiac anomalies. He had multiple cardiac septal defects, or holes between the left and right sides of the heart. He had a large Atrial septal defect, which wasn't that huge a concern - at least for now, and 3 separate Ventricular septal defects. This in itself was very highly unusual, because in the vast majority of cases where ventricular septal defects occur, there is only one. The position of his ventricular septal defects was also very unusual, occurring towards the top, bottom, and rotated around somewhat towards the rear part of the heart, rather than in the middle of the septum as is much more typically seen. He used the palm of his curved hand to illustrate this to us, tracing on his palm where normal ventricular defects are seen (between the ring in middle fingers, typically), and where Ryan's were instead (up towards the fingertips, down towards the heel of the palm, and along the fold of the knuckles over towards the pinky finger more). Keep in mind that Ryan was a 5 lbs. infant with a heart about the size of one of your adult fingertips, so just being able to diagnose this condition so precisely was a significant and inspiring accomplishment of our modern medical technology.

He said that if there was just one ventricular septal defect and if it was small enough, it might be initially handled with some medications, but larger ones, went to surgery very quickly. In Ryan's case, with 3 defects, there was to be no option but surgery, and it would be surgery of the most dire and critical sort. It did not have to be immediate, as in that day, but it would certainly need to be very soon. If Ryan did not undergo surgery to fix the holes in the cardiac septum, his fate was already sealed. He would weaken, turn into a "blue baby" and die - likely within 2 months, 3 months at the outside, and quite possibly even sooner.

He immediately recommended that Ryan be transported in the next 18-24 hours to the A.I DuPont Hospital for Children in Wilmington, Delaware, and placed under the care of Dr. Charles Norwood, who we were told was a world-renowned doctor with special skill and experience in dealing with patients like Ryan. He added that if Ryan were his own son, this is what he would do.

To say that we were stunned at the doctor's pronouncements about Ryan would put far too mild a face on it. We had, in a matter of a few exhaustingly condensed days, gone from happy parents expecting the joyous birth of a son, a boy to proudly carry on the family name, to nervous parents, uncertain of what was to come next. Now, our little son was certain to die - and soon, unless surgeons could save him. Somehow Barbara and I held it together through that meeting, and gave our consent to his treatment plan and transport to Dr. Norwood's hospital in Delaware. The subjects of money and insurance didn't even enter our minds at that point. Had we needed to wrestle with those weighty issues just then, I'm sure we would have melted down into overwhelmed and useless puddles of emotional goo.

Our family, both Barbara's and mine, rallied to help us immediately, our church family too, offered to step forward and assist with anything we asked. We were too stunned to appreciate the things being done for and offered to us immediately. We reacted out of habit in caring for our girls, explaining as best one can to an 11 year old and a 3 year old what was going on with their new little brother. As the next few days came and went, both sets of grandparents alternately went with us to the hospital to see Ryan, or stayed home with the girls. Church families brought in dinners and meals for all of us.

Ryan was transported via an advanced life-support-equipped ambulance with a cardiology specialist and nurse accompanying him from our local hospital in Camden County, NJ to the A.I. DuPont hospital in Wilmington, Delaware, a 45 minute drive from our home.

We were amazed at the differences from any other hospital ever we'd seen to the facilities there. Dr. Norwood was given a blank check by the DuPont family's heirs years earlier to return from Europe (we later learned that he'd gone to Switzerland after making pediatric cardiac surgical history at the Childrens' Hospital of Philadelphia - CHOP - in the 1980s, and the DuPont people later lured him to return) and build, from scratch, exactly the kind of facility he wanted, the building design was his to orchestrate, the operational planning was his to determine, the personnel and policies his to implement. In Dr. Norwood's decades in the field, he had seen repeatedly firsthand how the stresses on the families of ones so young as his patients suffered daily due to inadequate-room-size-enforced separations of parents and children. The emotional toll this wreaked on both children and parents to separate every night because there was not enough room for them to stay together put more dangerous stress on his little patients. He built his ward in the hospital so that parents, both of them, had beds in the same rooms as their children, so that there were no tearful nightly separations, and so that the wear and tear on patients, their parents, and extended families could be minimized. He saw that it made a difference in the outcomes of his tiny patients for whom the proximity of parents is a vital component of stress which can kill those in dire health situations.

When we arrived, we were greatly comforted to know that we would not be separated from our son; nor he from us for any longer than was absolutely necessary for his surgery and immediate post-operative recovery. After all, we knew then that our time with him would be very brief unless the doctors, together with ample outflowing of blessings from above, could extend their miraculous skills and talents and save him. So, every moment spent with him was a precious gift to us.

Ryan's condition was evaluated most carefully and monitored closely in the following days, and on his 10th day, Dr. Norwood and his surgical team decided that the following morning was to be the day to operate on Ryan's multiple cardiac septal defects.

That next morning dawned early for us. Ever since the pediatric cardiologist said those awful words: "We have to talk" we knew this moment was coming, but it was a theoretical, future moment. However, this morning, it was here, before us, right now.

Ryan was now just 11 days old - or would be in a few hours, if he were to live that long. We took him form our room, held him, kissed him, and we walked slowly and silently down the hospital hallway, my wife Barbara holding loosely on to my right arm where our son lay nestled. We somberly went through a set of double doors that opened automatically before us, walked further, turned right around a corner to face another double doorway which also opened for us automatically. We went through those doors too, increasingly nervous on the inside, but yet outwardly very calm, turned to our left and went a few more paces and turned right again to face another double doorway. These doors were open, and a woman, a nurse, dressed from hair to toe in green surgical garb awaited us.

"Do you want to take a few more moments with him?" she asked. Though her question was asked nicely, and her tone was compassionate, it rang with the weight of additional ominous words she omitted, like "final" or "last" - for that is what we all literally faced in that weighty and ominous moment. These could easily be the last few moments we would ever see our infant son still alive as the surgery he was about to undergo was absolutely life-threatening in and of itself.

Barbara and I both turned towards one another to look down lovingly, and nervously, at our infant son who rested quietly, still slumbering, in my arms. We each stroked the hair on his tiny little head once or twice more, kissed him a few times gently, savoring the warmth of his head against our lips. Then, after a few too-brief moments, Barbara and I looked at one another, sighed quietly, and I turned once more towards the nurse and I stretched our son towards her as she reached out for him.

He snuggled too quickly and too quietly into her arms, (it seemed to me that he should have protested this transfer from us to her, but he quietly rested throughout it) she bounced him ever so slightly, and for the life of me, I can't seem to remember her exact words right then, but whatever her actual words were, her tone struck me as too light and somewhat too artificially cheery for the ominous occasion that this moment was - at least for us. She unhurriedly turned away into the double-doorway behind her with our infant son and began walking slowly away from us towards the operating suite.

I wanted so badly to stop her, but knew I shouldn't. I began to lift my arm as if to motion to stop her and tell her "Wait! We're not ready for this!" - or some similar protesting thought. ...But I said nothing, my arm only making a feeble and aborted move towards her, as those automatic double doors slowly closed behind her.

We stood there for several more moments, staring after them, even after the doors had fully closed and we heard the electric latches loudly click shut automatically. And it is this moment I can find no adequate word for: Nervous? Anxious? Fearful? Agitated? Alarmed? Excited? Aghast? Sad? Angry? Concerned? Confused? Dejected? Depressed? Distressed? Befuddled? Discombobulated? ...and perhaps just plain lost. All these feelings and thoughts - among a good many others flowed through our minds. Also, some happy and hopeful thoughts too, as hope for good results of the open heart surgery Ryan was about to undergo were realistic, even if in some considerable doubt.

All these thoughts and feelings were simultaneously in play, but none can adequately describe the feelings of this moment to me, though perhaps "bereft" comes closer than any of the other words do by themselves.

"Did I just hand my innocent infant son over to be saved - or killed?" ...was probably the most sobering - and frightening - of those many jumbled thoughts and feelings just then. As it turned out, that day we would not get to know any answers to that question for many hours.

One thing is certain to me, nothing in all the normal life experiences of growing up, and growing older, getting married and having healthy older children will adequately prepare you to deal with the emotional weight of such a moment as we shared standing before that horrible just-closed doorway the nurse has just walked through as she took our son away from our empty arms.

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byGrandPaM© 7 comments/ 8924 views/ 0 favorites

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