story: The Missing Daughter

[bee_pipes]

I was in the delivery room for the blessed event. That was the fashion of the day; my father was provided with a waiting room and an ashtray when his children were born. The first impression I had when labor started was that this was no place for a woman. There was much noise, recriminations from my wife and great activity from the medical staff. The staff was hustling to and fro, busily checking equipment, measuring fluids and making preparations for the entry of the newest member of our species. My wife and I had both attended a sort of Lamaze class. I found much of the technical information interesting; supplementing the store of information I had about the human body from high school health classes and my own readings. I had managed to endure some of the exercises for breathing and other activities regardless of how silly it felt. So far as I could see, events in the delivery room were progressing as we were lead to expect; the medical staff did a wonderful job of talking about what they were doing so that we would understand the activities.

We had decided on the name Kerry Anne, a name I had heard in an old Hollies song. I didn’t much care for the names people were giving their children at the time and the one we picked would fit right in with the roster of Irish names on both sides of our family. Before we had decided on the name we used to refer to her as Bingo. Whenever she would kick, my wife would tell Bingo to calm down. Whenever my wife wanted something, generally a flavor of ice cream that required a late night trip to the store, she would tell me that Bingo wanted rocky road, butter pecan or whatever flavor was craved. Bingo had been a central fact in our life ever since we learned my wife was pregnant. All decisions large and small were weighed by their consequences and how they would affect life when Bingo arrived.

My wife was induced with pitocin, a drug that would trigger labor contractions. We had made a number of midnight runs to the hospital for false alarms – Braxton-Hicks I was informed – and returned home after competent medical authority had told us “not yet”. If you have never had the pleasure, there is nothing longer than a ride home with a woman that has been pregnant for nine months and told she was not yet ready. The depression hangs in the air of the car like cigar smoke; all you can do is endure its presence until it settles from the air. My goodness, it did seem to me that she had been pregnant forever. She wasn’t pregnant when we met, but after nine months it was difficult to remember “not pregnant” times. I was a mere outsider, performing a supportive role; I couldn’t imagine what she was going through. Today we were in the home stretch and would not be returning home without our daughter.

The labor seemed to be progressing as I was lead to believe it should. When our daughter arrived she was put on a nearby counter. This would be the APGAR test, a basic assessment of the health of the baby. We had been told about this in the baby classes and warned of things that could appear to be cause for concern but would clear up shortly. So far, so good. Then, before I even realized what had happened, the baby was whisked from the delivery room with an entourage of staff members. Curious, they didn’t mention this in the baby classes. My wife would have been concerned, but she was dazed from recent events and not herself. That was a blessing. My wife could be quite insistent when answers were not provided immediately. With all the monitors and IV hoses, I did not think an uproar would have been easily dealt with. Eventually they moved my wife to a room where she started to regain her senses. I was hit with a barrage of questions: “Where did they take the baby? What did they say? Why didn’t you ask them what was going on?” All fine questions, but I have to admit I was a bit thrown off by events; this was my first birth and my inexperience with this sort of thing was really coming to the front.

Finally, after a few hours of being ignored, a member of the staff entered the room and updated us on the situation. Our daughter had failed the APGARS and the staff reacted immediately. She was taken to ICU and placed under the care of their most experienced neo-natal doctor. We were assured everything that could be done was being done, and at this time they did not know enough about the cause and scope of the problem to even try attempting an explanation. They would continue to devote their time to investigating the situation and come back to us when they could confidently explain matters. We were left with our own thoughts, naturally fearing the worst. Again I was blessed with a fatigued wife; she dozed from time to time, relieving me of fielding questions I had no answers for.

It seemed like we waited forever. The labor had been induced in the early afternoon; it was well past dinner time. The doctor entered the room and slowly started explaining the events of the day. Our daughter, when born, had not responded in the manner of a typical newborn. The result was a hodge-podge of symptoms that were being documented in the hopes that a recognizable pattern would emerge, indicating further investigation and testing, and hopefully treatment. So far she was breathing and all other vital functions were sustaining life; but she had some puzzling symptoms like seizures and the absence of normal infant reflexes. We had learned of some of these reflexes in our baby classes. Two of the more important reflexes are the rooting reflex, which helped an infant locate the nipple and clamp on to nurse, and the suckle reflex, an automatic response that made a newborn eat when a nipple was placed in their mouth. All of the reflexes were noticeably absent. We were left with a parting statement that the staff was not completely sure of the cause or extent of the problems, but they would continue to investigate. Until then we were left alone to wait. My wife eventually fell into a deep sleep, a result of the day’s activities, and I started the long drive home. Tomorrow was a work day.

The following day I informed my boss of the situation, I was in the Marines at the time, and was given leave from work to attend to my family. I returned to the hospital and resumed the wait with my wife. Eventually, the doctor returned and delivered the results of their testing. They had found that parts of our daughter’s brain had become calcified, indicating that sometime during the pregnancy she had been deprived of air. Her compromised brain resulted in an assortment of problems: it affected breathing, resulted in seizures, and seemed to have disabled many of the reflexes with which all babies enter the world. The condition was called cerebral palsy, a catch-all term for the symptoms of brain damage. After the update we were again left alone. The news had devastated us. By then my wife had been discharged and we both left the hospital for the long drive home. We didn’t say much, each of us silent while thoughts raced through our heads.

We were exhausted by the time we arrived at home. We undressed and went to bed, where my wife sobbed and I held her. By that time my thoughts had turned a little darker, I was angry with God for having shafted us in such a thorough manner. The more I thought about it, the angrier I got. At such a dark time, it is easy for the mind to list an entire catalogue of past transgressions, sins and actions that could justify such retribution. I had been pursuing this course of thought, but for the life of me I could not think of a single reason why my wife or daughter should be included in this punishment. That’s the funny thing about self-pity; it can appear dressed up in noble garb, ready to make assurances that the user is unjustly persecuted and that the greatest injustice was the collateral damage. Excuses can be made for extraordinary circumstances, youth and undue stress; but it is times like these where we show our true colors. With a wife completely destroyed by this calamity and my daughter in need of attention, I chose to indulge in this pursuit and became useless to both of them.

This was my weakness, maybe not unique to people in general, but certainly not a proud moment for me. This is also where we show our strength as a species and society. Close friends had heard of the recent events and gathered outside our apartment. They marched in and began cooking, talking, and getting us moving. They supplied us with questions to ask the doctors. We were incapable of any kind of rational thought; we had a full plate with just trying to hang onto each other. The birth of our daughter, a hopeful event we had looked forward to for some time, had knocked our legs out from under us. Friends had stood us back on our feet and pushed us back into the world.

As soon as I was able, I began making the phone calls. I was dreading that. Dealing with emotionally charged situations has never been one of my strengths. I had all I could do to keep moving. A friend suggested it might be good to break the news when I could, rather than being called away at a crucial time by family members demanding an explanation. The first was to my mother. Mom is a registered nurse by profession, and an old warhorse to boot. She had a hide tough as a rhino and in the course of her long career had seen sights that would have made me ill. She had spent most of her time working in hospital nurseries by her own choice; she preferred caring for babies over any other aspect of nursing. She had no doubt seen every misfortune that could befall a newborn, but started to cry as I explained the situation to her. The next call was to my wife’s mother. She listened to my explanation in stunned silence, ending the call with a plea for her daughter to call as soon as she was able.

My wife and I spent time at the hospital, learning how to care for our daughter. We had long discussions with the nurse charged with her care and became adept at inserting nasal-gavage tubes, through which our daughter would be fed; became competent with handling oxygen and medications; and grew to understand exactly what would be required to keep her alive. There were other activities that would soon become daily routine – range of motion exercises to prevent her from losing muscle and deteriorating physically; use of a vibrator to knock loose phlegm, which would need to be removed to prevent choking and lung problems; and the use of an apnea monitor, to alert us if she stopped breathing in her sleep. There are so many things that are taken for granted with a healthy baby. Breathing, resistance to infections and digestion were all things that had to be monitored for lapses. The physical damage to her brain had caused all these supporting systems to become faulty and unreliable. We were also put in touch with a group of parents with handicapped children that met every month.

Finally, we brought Kerry home. I was part of a family that had six children and had participated in diaper changing, midnight feedings and most other aspects of caring for infants. I was no stranger to this way of life. The most important thing at that time was to find some sort of routine to fall into. There were minor annoyances to get used to, the greatest being that I am left handed. It always seemed like my wife would place things in the opposite location of where they belonged. Reaching for wipes or fresh diapers always seemed to require reaching across the baby. Of course, when I put them back they were in a location more convenient to me. When my wife had to change diapers she would find the same situation I had – everything was in the wrong place. It’s the little annoyances like this that can lead to short tempers and frustration. We eventually muddled through, talking about these small problems when we realized they existed. I was 25 at the time, quite impatient and full of energy; I learned the art of patience and the relative unimportance of these minor inconveniences. For an infant prone to seizures and unable to recognize the world around her, Kerry seemed to recognize us. Being held by my wife or myself had a calming effect on her. As she grew from newborn to infant, her preferred place was on one of our laps, leaning back against us. One of my favorite things to do with an infant is nap with them on my chest. I always figured that was what sofas were put on this earth for. I had done it with a brother, sister and nephew in the past and found it was a most comfortable way to keep tabs on a child and get a few winks in the process. Kerry took to this ritual like a fish to water. On a bad day when it seemed like there would be no break in the seizures, we could retire to the sofa and get a nap. It seemed to calm her down and quiet the seizures.

We were most grateful for the parents group for disabled children. Meeting people living well under similar conditions is the best medicine in the world. It is shameful to admit but I still had bouts of self-pity. Meeting these more experienced parents and learning from them made the whole ordeal look manageable. They didn’t waste time crying about how unfair the whole situation was, they were busy trying to improve their situation and desperately looking for a way to improve their child’s life. State programs promising assistance with medical bills, equipment and other necessities were run like most state programs – low priority and apt to ignore claims for assistance. We learned how to navigate this bewildering maze of benefits and how to keep a positive attitude in the face of difficulties that would cause a saint to drink. We learned tricks, such as how to make a hammock that would fit over a standard crib to provide a comfortable and secure sleeping arrangement for our daughter. Perhaps most importantly we learned how to keep hope alive. I have no doubt there were members there clinging to false hope, obsessed with the idea that there was a cure for their sick baby out there. There was also grim talk of how to set up annuities to ensure our helpless children would be cared for in the event of our deaths. These people were, in a word, courageous. I have had the pleasure of knowing

[bee_pipes]

some remarkable people in my life, but I have never met a group of people that showed such determination in the face of personal tragedy. They faced the world and all the misfortune it threw at them with a sneer, and occasionally a smile. I also suspected there would be nights, like the ones we had, where they silently sobbed until sleep came for them.

As bizarre as it all seems now, we adapted. We found our routine and slipped into it. In a few short months our days felt like we had been living that way forever. There were regular, reoccurring appointments with doctors, physical therapy and hospital visits. This routine would also be regularly interrupted by ailments that would require hospitalization. Kerry’s compromised system would often fall ill to minor infections that would not cause a moment’s unease in a healthy infant. These bouts would involve admission to the Children’s Hospital in San Diego, a fair distance to travel in the opposite direction of work. My wife, who had not returned to work, would stay with the baby all day and act as watchdog. Doctors and nurses were not allowed near the baby until they had explained their business to my wife’s satisfaction. She generally approved of their intentions, but there was more than one occasion where increasingly higher levels of administrators were called in reaction to her refusal to allow treatments she deemed unnecessary. Such confrontations would escalate up the chain of command until she was convinced of the necessity of a procedure, or they became convinced she would not allow it and gave up. I, on the other hand, would work until quitting time, slip home for a quick bite, and then relieve my wife at the hospital. I stood the night watch until my wife returned in the morning. Then I would retrace my steps, adding a shower, and return to work. These hospital stays were trying, but we saw no other alternative. One such stay resulted in the installation of a gastro-intestinal tube. The gastro tube would replace the nasal-gavage tube we had been using for feedings and medications. Kerry, in spite of constant attempts by us, had never acquired the ability to eat in the manner of a normal infant. She had never developed a suckle reflex, nor had she learned to handle a nipple. Rather than baby bottles, we had large syringes that would be attached to the NG, and now gastro tube in a manner similar to a funnel. Formula and medications in pre-measured amounts would be pored into the barrel of these oversized hypodermics and allowed to drain into her stomach. There was quite a knack at getting the tube into the stomach, where the meds and nutrition were needed, and not into the lungs, where disaster waited. Both my wife and I had become quite skilled in these feedings and could perform them anywhere. All other activity would cease until the baby had been fed. Her feeding schedule was the clock we ran our days by.

Kerry passed away one night, shortly after reaching nine months of age. There was no hint that it would be her last night on this earth. If anything, it was one of the most pleasurable nights in my memories of her brief life. I was sitting at the table in our small apartment, bouncing her on my knee. It was a Sunday evening, and though the day had been marked by frequent seizures, they had become more infrequent as the day turned to evening. My wife was in the kitchen, in full view of the table, humming and cooking something for dinner. We attended to diapers, feeding and medications and then put her down for the evening. After a little TV we retired too. I was awakened in the morning by my wife screaming that the baby wasn’t breathing. Normally I am slow to wake but that morning I was of our bed like a shot. I pulled the baby from her hammock over the crib and immediately started CPR. Between breaths I kept yelling at my wife to call 911. She was hysterical and I was helpless to stop her, having my hands full with counting breaths and gently pressing the baby’s chest. Eventually my wife ran out of stem, realized what I was trying to say and made the call. I knew the CPR was fruitless; the baby was cold when I seized her from the crib across the room. But my training had drilled into me that you continue CPR until a competent medical authority arrived on the scene and took over.

The paramedics arrived in an ambulance and took over. Police arrived shortly after. Just as I feared, they said any attentions had been too late, Kerry had slipped away sometime in the night. It was then it dawned on me that we had not hooked her up to the apnea monitor. I was in somewhat of a dazed state from the events leading up to that point, and this realization struck me as more a matter of curious trivia. We had been using that monitor since the day we brought the baby home. Setting up the monitor was more than routine, it was habit. We never left the monitor off – it had been drilled into us both through repetition. Many were the nights I got up from the bed because I did not remember connecting the monitor and could not remember seeing my wife do it. One momentary lapse in routine had resulted in calamity.

The paramedics pronounced her at our little apartment. They took her out in a gurney, a small figure draped in white sheets in the middle of a conveyance large enough for an adult. We got dressed and drove to the hospital. After waiting some unknown time, a member of the hospital staff approached us and told us what they had found. The coroner was calling it crib death and closing the case without autopsy. They mentioned that the description of our apartment by the paramedics had much to do with this. They had never seen such a small apartment decked out with all manner of medical equipment and were confident that all measures possible were being taken by us to ensure the health of our baby. They suspected no neglect or abuse, and advised me to not mention the matter of the apnea monitor. My wife asked to see Kerry before leaving. We were lead into a room, empty except for a gurney parked in the middle of the room. As with the ambulance gurney, Kerry lay under white sheets in the middle. She looked so small. My wife threw herself on Kerry and began to wail. Unsure of what to do, I let her wail for a time, eventually placed a hand on her shoulder and when the sobs subsided I gently lead her from the room. We returned to our apartment. I called into work because that’s what a Marine does. I made brief explanations and was given leave to attend to matters. Once again our legs had been kicked out from under us, and once again our friends rallied around us, propping us up until we could stand on our own.

My wife was pretty much of a wreck and I had a daughter to burry. A close friend rode with me out to the base and into town to make arrangements. I remember that it seemed like a long ride, with discussion turning to repeating every uncharitable thing we had ever heard about funeral homes and the people that operated them. This was an unfair assessment of the industry, but it did much to relieve the stress of the situation. Finding nothing satisfactory, but gathering all the information I could, we returned home. My wife was unable to participate in any decisions, so I had Kerry cremated. All that was her body was returned to me in a small white box made of cardboard. Inside the box was a small poly bag containing the ashes. A label on the box had her name and some letters and numbers, no doubt referring to case numbers or some other serial ID. We kept the box on the headboard of our bed for a few months. One day we collected the box, drove to the beach and scattered the ashes at the edge of the breaking waves.

My wife was never the same. Nobody should be the same after a life altering experience, but there were some fundamental parts of my wife missing. She mourned for some time, and I cannot fault her for having spent too short or too long a time doing it. As for me, I had to return to work. My job was our sole source of income and the military is not a job that one can quit. After six months or so my wife returned to work. I eventually was discharged from the service and found work as a defense contractor. Work took us from Southern California to Maryland, and then left us high and dry when the government cut back on defense spending. We moved to Indiana and took up residence in my wife’s home town. Life continued, but our marriage was never the same. Eventually, we divorced. After fourteen years of marriage my wife called it quits. She had become busy with resuming the life she left behind when she moved from that town. I became engrossed with working all the overtime I could, trying to get out of debt and find prosperity. We didn’t have the benefit of the friends in California to help us through this rough patch. Much like our baby, our marriage slipped away from us one night, unnoticed. I have the only pictures I own of Kerry sitting on the headboard of my bed. When we divided property I could not bear to take any of the small number of pictures we had of her, my ex-wife treasured them. The small frame and picture is one I have had since she was born, it was taken while I was holding her in the ICU. I look at that picture often. My ex-wife had nieces that were born the same year, I used to look at them and think of how old Kerry would have been.

Looking back on this story it may seem like a tragedy, but it is not that simple. Other than the reactions I experienced when I learned of her condition, I don’t believe it was a curse on my house or my family; it was not a judgment of my life up to that point, it was a responsibility that had been given to me. I do not wish it had not happened; I have become grateful that if it happened I was there to see that proper care was taken and the job was done right. It was not a responsibility one would take lightly or trust to others. I grew up a lot in a short period of time. I learned what being a father was about, and why God is most often referred to as a father; it is about unconditional love, not gender. I felt that, briefly. She was given to us, came to teach us what we had to learn, and then was taken away. She left us behind because God had other things for her to do. I learned life is too short to worry about small things; and how to make time for the important things. I also learned to have gratitude. Rather than beat myself for forgetting the monitor that last night, I have gratitude for the wonderful evening we had together before she left. Rather than recriminate myself for inadequacies and things done imperfectly, I am grateful for being given what I needed to care for my wife and daughter. I do wish for a healthy daughter and happy marriage, but I do not wish it had never happened. Still, sometimes when I sit down to a meal where my family is gathered, I can’t help but think that I have a missing daughter.

[bee_pipes]

This was a long time coming. Been walking around with this for years and finally got it written down.

Regards,
Pat

[Gwynyvyr]

Thank you for that. I have a child with multiple handicaps (including CP) and people do not realize what lessons in love and patience and understanding that are given to the parents of children born with difficulties.