All he could tell me was that as long as she was alive, we still had hope.
At the end of last summer, just before Labor Day, my wife (who was 6 months pregnant with our second child), Lynn, and I celebrated our 12th wedding anniversary with dinner and a show in New York City. The next day, we attended a family party in a church hall, and the day after that we visited friends and went out to a fine restaurant in their home town. You see, this was Labor Day weekend and we were having fun with our friends and family. Little did we know it would change our lives forever. That Monday — Labor Day — my wife began to feel a bit unwell, flu symptoms. She begged off yet another party invitation, a backyard barbeque, but I took Ben (our then-five-year old son). When we returned home, Lynn was feeling very poorly, and she called her OB/GYN. Since she had a regular appointment scheduled for Wednesday, it was decided we should wait.
The flu symptoms intensified on Tuesday, and when Lynn came home from work, she headed straight for bed and spent the entire evening there. She missed work the next day, but she dropped our son at his first day of kindergarten, and when I came home from work we all piled into the car and went to the doctor’s office. I was convinced she just had the flu, and I didn’t think we would be gone too long. When we arrived at the doctor’s office, it was nearly empty. I still remember sitting in there in those ubiquitous doctor’s office chairs, thinking that we would need to stop off on the way home for some flu remedy.
The doctor listened to the baby’s heartbeat, and felt for movement. What she heard and felt frightened her, but she hid her concern from Lynn. She asked us to go to the hospital, which was nearby, so they could run a few tests. So, off we all went.
At the hospital, I had to drop Lynn and Ben off at the curb and park the car. Lynn had already been entered into the admitting system by the time I returned, but it didn’t seem that anyone was in any hurry to have a doctor see her. I got a little annoyed, and tried to impress on the person behind the counter that the OB/GYN had indicated that this was a matter of some urgency. She simply shrugged.
We waited for what seemed like hours. As the afternoon dragged on to evening, Ben and I went to get dinner, while Lynn was moved to a special perinatal unit. When we returned Lynn was very upset and the faces of the doctors were grave. They were coming to the conclusion that something was seriously wrong. No fetal movement had been detected, and the baby’s heart was racing. A blood test was at the lab, but the attending physician was pretty sure he didn’t need to see the results. His experience told him that a serious and life-threatening infection had attacked Lynn, and he prepared us for the inevitable — the baby would have to be born that night. He explained to us that although a baby at 27 weeks had only 85% chance of survival, the baby inside the womb had no chance, and every hour threatened my wife even more. The operating room was being readied.
I called a friend to pick up Ben and my mother to stay with him overnight. By then the blood test had come back, and it confirmed the doctor’s instinctive diagnosis — white blood cells were twice their normal count. The doctor had saved a possibly crucial half-hour by beginning the preparations. The next few hours were an eternity. As quickly as an emergency can make hospitals move, it is never fast enough. Lynn was prepped and ready by midnight, and I was allowed to hold her and comfort her during the c-section. I remember the fear I had. They hadn’t told us the real odds against both mother and baby, but they didn’t have to. The number of doctors, med students and interns who piled into that operating room told us that this was something rare — and something bad.
When our daughter was born, she had an APGAR of 2. She was purple, and was intubated in the operating room. I saw them wheel her away in an isolette, and wished that I hadn’t, because I loved her the second I saw her. I was sure she wouldn’t live.
I stayed with my wife as they stitched her up and cleaned the room. The anesthesiologist, who had talked about football with Lynn during the procedure (to keep her mind off of what was happening) was very kind, and in a way which I find very difficult to explain now, made us both feel that everything was going to be alright.
I accompanied Lynn to the recovery room, knowing that I would have to leave her soon and go to be with our daughter (whom we had named Julia Patricia; we hadn’t chosen a boy’s name yet, figuring we had some months to decide, but this had been our choice the first time around, if Ben had been a girl), check on her condition and sign whatever release forms were necessary. But I waited with Lynn, afraid of what I might find when I got there.
We experienced a strange state of calm then. I think we both were confident that Lynn would be alright, and yet we were bracing ourselves for bad news. Maybe we both had a sense that this may be the last time we would ever be so calm again.
As soon as I was confident that Lynn was OK, I asked for directions to the Intensive Care Nursery (ICN). “Across the hall and down two flights in the elevator.” I knew that this hospital specialized as a neonatal care center, and that the facilities would be extraordinary, but I was completely unprepared for what I saw in the Intensive Care Nursery.
Not only had I never seen such a place, I never imagined a place like this existed outside of science fiction movies. The lights had been dimmed (I learned later that they were normally kept bright, twenty-four hours a day, except when specific procedures like ultrasounds were being performed, procedures which needed the lights lowered. Julie was undergoing these procedures at the moment I walked in) but there were machines with lights and sounds all over the room. And it was a big room. There were twenty to twenty-five babies there, all attached to monitors and many supplied with oxygen. The colorful lights and the bells assault the senses, and dazzle the eye. It struck me then as the bridge of a space ship. Over time, it became a second home to me, and lost most of its luster, but the first time I saw it, I couldn’t help feeling that if anybody could save her life, the people who worked here could. I walked straight in, and was promptly shouted at to put on a scrub gown and wash my hands. By the time I had done so, the doctor who was attending had been alerted to my presence. He came to me and struggled with what to say next.
He explained that Julia was very sick, and that they were treating various maladies (she had a serious infection and her lungs weren’t working too well), but that he wasn’t sure he could make any predictions about her survival. The definite feeling I got from him was that we shouldn’t count on it. No good doctor will give up without a fight, and I came to find that this particular doctor is very good. All he could tell me was that as long as she was alive, we still had hope.
Woodenly, I signed some release papers, and went back up to the recovery room where Lynn was. In the elevator I decided that I, of course I, would have to tell Lynn the truth as I knew it, but that I was going to try to keep our hopes up at the same time. There would be plenty of time for grieving later, right now I wanted her to recover, and I thought that hope would keep her spirits higher.
As the hours passed in the recovery room, we both expected that any moment some nurse or doctor would come through the door with the inevitable bad news. Occasionally, I sneaked out to the phone in the corridor, to keep my mother and Lynn’s sister abreast of events.
Finally, they moved Lynn to a regular room. It was located on a ward specifically for mothers who have had difficult births. I recognized this as a mistake immediately. How could we pass all of those babies and new moms and dads everyday? They put Lynn in a room with a second bed, but they mercifully kept the bed empty during our entire stay. The other mothers had experienced difficult births, but nothing like our case, and Lynn would not have been able to handle it if she had been forced to sit there while a “lucky” mom had her comparatively healthy baby brought to her.
I shuttled back and forth between the room and the ICN. They were in separate parts of the hospital, so it was quite a trek. Older hospitals which have had many renovations and additions over the years can be quite a challenge to successful navigation, but I became an expert in that first day. Since we were in a Roman Catholic hospital, there was a chapel (no “contemplation rooms” here), which I passed on every trip. In a desire to find some answers to what was happening to us, I stopped in more than once over the next few days, but to no avail.
Julia was located in an incubator closest to the nurses’ station. This position was reserved for the sickest babies, so they could be more closely monitored. Julie stayed there for a long time — nearly a month, in fact.
The doctors told us that the first 24 hours were crucial, and they were right. When I finally went home sometime during the day, I lay down for a few hours sleep. I remembered that when our son was born, this first night had been special for me. I had come home sat in our living room, just basking in the glow of newly-minted parenthood. No such glow was there for me now. Just gut-wrenching, abysmal fear.
After a couple of hours I went back to the hospital, in what quickly became a monotonous twenty-minute trip. I stayed with Lynn until Ben came home from school, and then went to bring him to the hospital. God only knows what fears had been assaulting him, and we wanted to reassure him that Mom was OK. Lynn wanted badly to see his smile, too.
We were pulling into the hospital parking lot when my pager buzzed. It was the phone number for Lynn’s hospital line. I used my cell phone to call while I gave the keys to the parking attendant. Lynn was hysterical. “They’re saying she’s having an episode and we need to get there right away!” Neither of us knew what that word “episode” really meant, but we would soon find out.
I ran up to the maternity ward and walked into Lynn’s room to find her throwing things about. Another mother on the floor, who was being kept under close observation because she kept trying to escape from the hospital to have a cigarette, had thrown a fit because she couldn’t get her Prozac fast enough, and all of the nurses were engaged in chasing her down. No one could get a wheelchair to help Lynn to the ICN. She yelled at me to go to the ICN quickly, without her, and I complied knowing she would follow as soon as possible.
My heart now raced faster than my feet, because Lynn made it clear that what they had told her was pretty bad. I didn’t want my day-old daughter to die alone.
When I got to the ICN I saw that there were many people working furiously on Julie. The respiratory technician was trying to do two things at once and asked me to “bag her,” so I did, not knowing whether I was doing it right or not. I think he felt that it didn’t matter anyway. The attending doctor came over and someone else took over the bagging duties. He spoke quietly and told me to get Lynn. I told him that she was on her way. He said something like, “I hope she gets here soon.” Julie’s vital signs were very poor, and they were sure she was on her way out.
When Lynn arrived I gave her what information I had, and we watched the nurses and technicians work. We were asked if we wanted a priest, and at first we said, “No.” You see, neither of us is what you might call a “practicing Catholic” anymore, although we were both raised that way. In fact, I am a committed atheist. But then something happened. We looked at each other with tears in our eyes and knew that we wanted to give Julie whatever help she might need. I asked a nurse standing nearby to call a priest, and she moved quickly. The nurses also surrounded us with moveable hospital curtains, but I’ve never been completely sure why. To give us privacy in this terrible moment, or to protect other parents from direct contact with our seemingly inevitable grief?
The priest came, and he was disappointing. I had hoped for someone inspiring, who would speak to us gently and give us hope and solace, but he was short and dumpy, spoke English only haltingly, and wore faded blue jeans. He performed the ancient (and to me, still useless) ritual, and departed. A nun who had been standing with us, Sister Barbara, came over and put her arms around our shoulders. Her simple gesture of heartfelt empathy touched us. It would mean so much over the next few weeks.
Julie’s vitals began to rise. She had made it this time. This episode, the closest call we had, shook us for a long time. I never left the house without a pager and a cell phone, I never wanted to be out of reach. For months afterward, every time the phone rang, every time the pager buzzed, I assumed that it was bad news. My palms would sweat and my heart would begin to pound.
After Julie stabilized, we remembered that Ben and my mom were downstairs in the hospital lobby. I said I would go down and that Lynn should compose herself. I can only imagine what our faces must of seemed like to them, streaked with tears and pale as sheets. I’ve never asked.
The next day, I was at home with my mom when the phone rang. Of course, I jumped at it. It was Lynn, hysterical again. I assumed it was bad news, and it was. Not the news I expected, I guess, but news which would change our lives almost as completely as if it had been.
After Lynn calmed down, she told me that they had identified the infection which had caused her to get sick. Listeria. I’d never heard of it before. Lynn told me that it came from something she had eaten, and I realized that she was blaming herself. She was sobbing, and she told me that it was her fault. I told her that I would be right there, and jumped in the car and sped to the hospital. I was afraid of what I might find when I got there. Lynn was so upset, distraught, I didn’t know what she’d do. When I got there we talked about it again, but she quickly became inconsolable. She was filled with self-blame and anguish. I tried to tell her that blaming herself for something like this was like blaming a passenger in a car blindsided at an intersection, but she was too upset to listen.
None of the medical professionals could tell us anything about Listeria. They’d not seen many cases of it, and hadn’t really read much either. Someone told us that it could come in Mexican cheeses, but one doctor disparaged that (in fact, it can). But everyone agreed that Lynn was not at fault, that this was a freak accident that could happen to any one, without warning.
I responded in my usual way: I did internet research. I found out some information which frightened me, particularly that a fairly large portion of the expectant mothers who contract Listeriosis die, and that Lynn could have been one of them. In our protected society, we don’t expect healthy people to die from food poisoning, but 1,800 do each year (or so I found out).
I also found out that Listeria is killed by pasteurization, but not by normal cooking. It can be found anywhere, from fresh produce to deli meats and unpasteurized cheeses, but is often found in processed foods, like potato salad or hot dogs. It is not detectable to the naked eye, nor can it be smelled. It doesn’t have a great impact on most healthy adults, but can be fatal to expectant mothers and their unborn children, the very young and very old, and people with compromised immune systems. I also found out that the incubation period is suspected to be from 3 to 70 days long, which makes it very difficult to track down the source after symptoms show up. The county health department where we live notified us of two food recalls for Listeria after the fact. Either could have been the source, or some other source is entirely possible. We have no idea if Lynn got sick from food she ate Labor Day weekend, or at a Fourth of July party, and we never will. We’ll never know who did this to our baby.
Lynn was treated with antibiotics and released a week after Julie’s birth. In fact, she says that she felt better the minute she was c-sectioned. Apparently, the Listeria bug attacks the placenta. It had already done a number on Lynn’s, according to the doctor who was there. Two weeks after the Julie was born, Lynn was pretty much recovered. Physically, that is. The emotional scars will take much longer, perhaps some of them will always cause suffering. Part of her still (and perhaps always will) blames herself. And Julie’s ordeal was just beginning.
For three weeks the doctors in the ICN would not tell us whether Julie would live or die. A cautious lot when it comes to predictions, they said that while she seemed to be doing well, so much could still happen that they would not want to get our hopes up.
We asked them in a different way, “When will you stop telling us that we have a very sick baby?” They recognized this ruse for what it was, and answered, “Soon, maybe.”
She had transfusions, a chest tube inserted, a feeding tube inserted, a “central line” inserted, to allow them to transfuse her and administer medications without an IV. Neuroultrasounds, bililights, blood workups, pulse-ox monitors, desats, all of these terms became part of our daily vocabulary. And so did one other: Intraventricular hemorrhage.
At some point in the first 48 hours of her life, blood vessels in Julie’s brain began to bleed uncontrollably. The blood leaked out of the open spaces in her brain — the ventricles — into the gray matter. Blood in the brain will cause cells to die and cysts to form. I asked the doctor who told me all of this news whether there was a chance she would be unaffected by it and he flatly told me, “No, there isn’t.” Gross and fine motor skills would likely be impacted; cognitive abilities, sight, hearing, all of these things could also be involved.
This blow nearly crushed us. Again, something we didn’t even know existed was changing our lives forever. And again, the doctors could not tell us anything concrete about her prognosis. “Only time will tell,” was the only answer they could give.
Another condition caused by bleeding in the brain is hydrocephalus. This is a swelling of the ventricles caused by the blockage of a duct which draws off cerebral spinal fluid. If the ventricles continue to fill with CSF, with no way to relieve the pressure, the brain begins to compress, and further damage can occur. Breathing and heart rate are affected, in babies, the head size increases dramatically, then more brain cell loss, and finally death. As recently as a few decades ago, children with hydrocephalus routinely died, and Julie would have too, except for procedures which are comparatively new, which allow surgeons to insert a tube into the ventricle and draw off the CSF, first into a syringe through a spot on the head, and later, permanently, through a tube called a shunt, into the body.
This all sounds nightmarish enough, but the worst part is that the equipment easily becomes infected, requiring two more surgeries, one to take out the hardware and another to reimplant it after the infection is cured. Although neurosurgeons are nonchalant about it (they are a ballsy bunch), it is still brain surgery. Julie had five of them by the time she was four months old.
Two bouts with meningitis; hundreds of IV sticks, many in her head because the nurses could no longer find veins in her arms and legs to use; thousands of apneas (a pause in breathing) and bradycardias (a slowing of the heart beat); six or seven transfusions; and a bout of blood in her stool, which mystified her doctors and was probably caused by a sensitivity to milk products. All of these things happened to Julia before she even came home. Then she came home, only to go back one week later because of an infection of her shunt. She stayed 18 more days and came home again two days before New Years Eve, 1997.
Since she has come home for good (we hope) she has become a beautiful baby, who smiles constantly, can talk up a storm (10 words at the age of 15 months), eats like a monster, loves her brother, her dog and her parents (in that order), but who has been challenged by her injuries. Her right hand has seen a lag in its motor skills, and she still cannot sit up at the age of 18 months. Her sight and her hearing are fine, but no one can assure us that she will ever walk. Through excellent and intensive physical therapy, Julie has made steady but slow progress on every front, and we are hopeful about all of these things. But so much has been taken from her (and us) through no fault of her own; this is a burden we will live with for the rest of our days.
This story tells of why we wish to do whatever we can to fight for safe tables. What has happened to us happened, and there is nothing we can do to turn back the clock. But if we can help protect others from facing the same horrors our family has, we will get something good out of something evil. What happened to us should never happen to anyone, as long as it is in our power to stop it. We are dedicated to making that hope a reality.
Copyright 1999 by author: Dan (Julie’s father)