THE ANGEL'S STORY Chapter 3
O-my-God I was scared! Dr. Schumann's words helped to hold back the tears....at least for a little while. The white coats which crowded around the examination table, obscured my baby from view, but the white coats did not hide her screams as the serum from the spine was drawn away from her little body. Time was standing still...I do not remember breathing. Had I covered all of the possibilities of those things which I could do to help her? What did I forget...What did I forget...What did I forget? Was there anything else I could do? I kept cross-examining myself, over and over and over again.
Several doctors approached me. "Are you the Baby's mother... Yes? Then please come with us Mrs. Duncan.....We need to ask you some questions now." The next thing I remember... I was sitting in a small office... then the interrogations began.... "When did you first notice that something was wrong Mrs. Duncan?" "Exactly where were you when you first noticed her temperature change? "Can you give us a more exact location?" "Where had you been in the twenty-four hours preceding the first time you had noticed these changes?" "Do you own any pet turtles?" "Has she had anything to eat, other than breast milk and the baby aspirin?" "Has anyone in your family eaten powdered eggs....or reconstituted eggs of any kind?" "Who has handled the baby besides yourself?" "What were the conditions of the places in which you stayed over-night?" "Were the bathrooms clean?" "Are there any sewage problems in your home?" "Any sewage problems in the Grandparent's home in Texas?" "Do you think that you can name the places where you stopped along the way?" Under this pressure, I admit that I did not do very well. It was difficult to recall even the most recent events, let alone tracing the events in chronological order....Every detail was needed...Even ones which seemed to be insignificant. Geeeze! What if I missed something! O-God, what if I missed something? My clothes were soaked with perspiration and I shivered in the air-conditioned rooms of the Emergency Room...It was impossible to think clearly.
Small vials containing spinal fluids and blood were whisked out of the room and then taken by technician, Al Godfrey, to the Laboratory for examination.. Later that day, I met Al Godfrey again. He would be kind enough to recount all the happenings down in the lab where the research was being done on Gitty's blood work. We ended up being: "cup-of-coffee-friends." I looked forward to our time together each day, for his reports about lab reports. The need to understand what was happening to Gitty, allowed me to keep up the fight for her life. I wanted to learn as much as I could and if possible, not screw anything up. I purchased a layman's Medical Encyclopedia at the Grocery store in Edmonston, and over the coming months would read all 15 volumes. Understanding brings hope and hope keeps you going.
You really can't tell about the passage of time in a hospital because it does not relate to the outside world. You just hang there, suspended, thinking and re-thinking past events, and hoping like anything, that you got it all right..... and then you wait...and wait … and wait for some news ... not sure whether or not you want to hear it. A different doctor spoke with me at every meeting. I could not keep their input organized in any sort of meaningful way. Thinking straight was all but impossible as each doctor brought to me a different perspective. My mind was somewhere in the middle-distance of the Twilight Zone when a white coat stepped into the waiting room area and called out my name...."Mrs. Duncan? Over here please. Thank you...Please … please sit down Mrs. Duncan" We sat in the far corner of the waiting room, away from the other patients.
This is what we have so far Mrs. Duncan.... I am afraid that your little one is a very sick child. Fortunately, Gilly, is that her name? " "No," I replied, "It is Gitty." "Sorry, I mean Gitty. We know that your daughter Gitty, has some form of Spinal Meningitis, because of the symptoms she is exhibiting. She is so quiet and sleepy. Her pupils are dilated and her body is rigid. She has a low-grade, persistent fever of ninety-nine degrees. These symptoms when coupled with a high white count in her CSF (cerebral spinal fluid,) tells us that we are dealing with some form of Spinal Meningitis." But we do not know which specific bug is causing the condition called Meningitis." I had heard this tag before and recognized it immediately as deadly stuff! "Fortunately," the doctor continued, "the Lincomycin which she received the day before, was highly effective and has either wiped out or suppressed any trace of whatever it was that is making your child so sick. The bad news is, that now, we cannot readily identify a specific cause. We do know however, that we are dealing with a bacterial infection, because the Lincomycin was so effective against it. Had it been a Viral Meningitis, the antibiotics would have been ineffective. Right now her white cell count is sky high in her blood work, which further indicates a severe bacterial infection remains in her system, so we are treating your daughter prophylactively, with a broad based antibiotic called Ampicillin. We are just going to go on our instincts here and our experience Mrs. Duncan." Patiently the doctor explained that a sack surrounds the brain. This sack, made of living tissue is filled with a watery substance in which the brain floats. Floating in this fluid acts as a protectant and shock absorber. In your daughter's case, the sack itself, which is called the Meninges, has become infected. Like all infected tissue, it has become inflamed and swollen. This is all well and good if the infection is on a leg or perhaps on an arm because when there is swelling, the tissues just bulge outward, away from the body, but when the Meninges becomes infected and inflamed and starts to swell, well, we have a major problem, because the affected tissues cannot swell outward away from the brain, it is prevented from doing so by being encased within the skull. Instead of swelling outward.....the only direction for the tissue to expand is inward. These swollen tissues can build up tremendous pressure on the brain. It can close off the blood supply to the brain, resulting in paralysis and death. We think we know, symptomatically speaking of course, what we are dealing with here. We want to start your child on intravenous antibiotics around the clock Mrs. Duncan... We only have two effective drugs that we can use against Bacterial Meningitis. You see, Mother Nature has provided each one of us with an excellent filtration system called the "blood brain barrier." Its function is to filter out impurities before they reach the brain. This protective system is so efficient that it filters out most drugs as well.
We are choosing to use Ampicillin for Gitty because Ampicillin is an highly effective agent against these bacterial infections Mrs. Duncan. It is also able to pass right through the blood brain barrier, which allows the drug to do its work. We are going to fight this infection with everything we've got. Ampicillin is our best shot. We will go after it aggressively and hope to keep the swelling down, while the drug kills off the infection. Mrs. Duncan....We don't have much time. We need to get started now." A pen was pressed gently into my hand. "You will need to sign off on these release forms.....right here....at the bottom of page one...fine...and now sign again over here... and once more on the bottom of page five...Thank you.. We need to get started. It is the right thing to do and we are looking forward to a favorable outcome. We should know by the end of the week just exactly which bug we are dealing with...by that time, the lab will have back-cultured the samples which were taken from your daughter this morning. Al Godfrey, your lab technician, will keep you informed. This research will take some time....but we can...and will...decisively identify the culprit which is causing this sickness. I will speak with you tomorrow Mrs. Duncan" With a shaking hand and Dr. Schumann's words in mind, I signed the papers giving the doctors permission to treat our child and to do whatever was necessary to save her life. Making these decisions is an awesome responsibility. The doctor disappeared behind closed doors. Hot tears burned my cheeks as I found my way to the pay phone banks to call my husband.
Sometime later that night, I remember being with Gitty, who was now ensconced in the enteric isolation ward.... This is a unit of care reserved for highly infectious diseases....Everyone on this floor was dressed in white flannel gowns, gloved and masked....including myself. Within four or five days, we were to see a rapid improvement in her condition, which indicated that the antibiotic was performing as we had hoped it would. We were on the track for a full and complete recovery. Gitty seemed to be back to her old self. Her appetite returned; the fever normal; and the doctors and nurses were happy with her progress.
By the end of the week we had been given a specific bacterial identification from the lab.. Al Godfrey faithfully kept me up to date. He was a tall handsome man about 40 years old, I guess. He was a soft spoken man who had a quiet and gentle way about him. "This bug we are dealing with," said Al, "is a bacterium called Salmonella D." It usually causes god-awful cases of diarrhea and rarely does it get out of the gastro-intestinal tract, and into the blood stream, past the blood brain barrier and in to the meninges, as it has with your daughter. Salmonella D Meningitis is very rare. Contact with powdered eggs, turtles and human waste are possible sources for this infection"
"In one sense Sterett, this is good news. The enemy has been identified, and we have a good chance of beating it with antibiotics. On the other hand, Salmonella D is a particularly virulent sort of bug and hard as hell to knock out!" Al pulled out a pen from his lab coat and started drawing on a paper napkin, to demonstrate just why this bug was so dangerous. "Most pockets of infection are shallow… like this"... He drew two parallel lines with a slightly enlarged separation of the lines. It looked to me, as if someone had slipped a penny in between the two lines.... "but Salmonella breeds in very deep pockets which are shaped like a tear drop....like this.... Salmonella D is a typhoid related infection and this variety is the same disease, which infected Typhoid Mary Mallon in 1907. That's why the lab is so interested in your daughter's case. Have you ever heard of "Typhoid Mary?" I swallowed hard and nodded, Yes. "Mary Mallon was a carrier of Typhoid and did not get sick herself but while working as a cook in private homes, she managed to spread the infection to many people."
Where on earth did Gitty pick this thing up? Why had she contracted It? Was it because her immune system was low...or perhaps because she had not yet received her childhood vaccinations? Maybe we should have not gone to Texas. Maybe I had caused this illness....I wondered if I had been responsible for the contraction of this deadly disease. Al Godfrey assured me that most likely that I had not been the cause. Never the less, self-accusations would spin and flash like a pinball, batting back and forth in my head.
One evening, after a long day by Gitty's side, I arrived home to find a team of public health officials dressed in Haz-Mat outfits and masks, swarming over our house, trying to find the source of the infection. Everything was tested, including us...the toilet...tub, sink drains, dishes and garbage cans....even the door handles. The results were negative. This would indicate that somewhere on the road trip home, Gitty had come in contact with Salmonella. Perhaps a spoon had not been thoroughly washed? Perhaps she had gotten hold of a little bit of the scrambled eggs which we had eaten for breakfast at the road-side inn along the way....
I could not remember if the eggs had been fresh eggs or reconstituted from powder. Powdered eggs are a possible source of Salmonella poisoning.... Turtles of course were out of the question. Absolutely no turtles were to be found in our house or down on the ranch in Texas. But perhaps one of the children of the restaurant owners had a pet box turtle. We were never able to pinpoint the source of Gitty's infection.
We counted off the days in the hospital. Bowie and I traded off on the visiting hours, trying to cover all the bases at home and the hospital at once. I hated being split between the two children and worried that Mckay would feel abandoned and resentful. Would he understand? How could he possibly understand? Would Gitty? She needs us too.
The massive doses of intravenous Ampicillin apparently did the trick. And O'Hallelujah! On day 21, Gitty's test for Salmonella proved negative and we could take her home and get started on our new life together in Edmonston, Maryland. It was wonderful to be home again and start life anew.
Within twenty-four hours, our little Gitty was, once again, dreadfully sick. The low-grade fever, dilated pupils and rigid body returned. I knew that it was the same thing, all over again and called in to children’s Hospital. "Bring her in immediately Mrs. Duncan....We need to get to work. Bring her in now... right now...no time to loose! A team will be ready for her when you arrive....and Mrs. Duncan...Leave as soon as possible."
It was back to Children's Hospital and back up to the third floor's enteric isolation unit and back onto Ampicillin..... This time, for another stint of twenty-one days. During this period of time, while Gitty slept, I spent time with the lab technician, Al Godfrey. "You will be glad to hear that your child's case is extra special to the research department in this hospital," he said. "Several research doctors are working exclusively on your daughter's sickness." It was during one of these chats that I learned from Al, that Salmonella was just one of the causes of meningitis and that Salmonella Meningitis, in infants between three and six months of age, causes ninety percent of its victims to die.... and that of the ten percent that manage to survive... ninety percent of that ten percent, are 'vegetables" throughout their lives. One chance in a hundred is what we would have for a normal child. The reality of the enormity of the fight before us was just coming into view.
Parent's time in the enteric isolation wards was strictly limited. In order to have more time with her, I took up a paint brush during my stay there and painted the wards with cheerful cartoon characters for the children. This allowed me to stay a little longer and spend more time with her. By extending my hours on the ward, I was able to continue to breast feed her and to oversee her care first hand. Once again, on day 21, we received good news. Gitty's system was clear and we could take her home again.
Our joy was short lived, and once again, less than twenty-four hours would go by before we were in trouble again. This time, her left eye seemed to be crossed, out of position and out of focus. Gitty's left leg and arm now hung limply by her side. She was not able to grasp with her left hand or to kick her chubby little leg about. She could not sit up. The adjective "floppy" was a good description at this point. The fever was returning, and her pupils, dilated. Tears splashed down both our cheeks...knowing full well, the consequences of this infection by now, we rushed our tiny treasure back to Children's Hospital for a third time.
We were immediately taken into a small green room on the third floor at the end of the hall. A doctor explained that: "We have very few options left. The breeding patterns of this particularly virulent bug, are still happening in a few, very small, but very deep pockets within the meninges tissues." (Al Godfrey's napkin drawings of teardrop shapes, flashed through my mind.) "Although the Ampicillin has been very effective in getting past the blood brain barrier, it had been unable to clean out every single pocket of infection...If it misses even one pocket...well...It is just a matter of time before the bug will replicate and we have to begin all over again. We have given her the best shot we have. We have tried twice now, without success. The swelling of the meninges has returned and has already begun to cause some damage....The damage can be seen in the wandering eye and there is some loss of movement of her left side. We do not know if this loss is permanent or if it will repair itself. We are going to try a last ditch effort here. We want to put her on another drug called Chloramphenicol. Chloramphenicol, Mrs. Duncan is our most effective agent in our arsenal for getting past the blood brain barrier and at killing off Salmonella D."
"So why didn't we use this agent sooner," I asked. "Because, Mrs. Duncan, There are some nasty side effects which sometimes accompany this drug....Chloramphenicol has been known to occasionally cause a condition called Aplastic Anemia. This means that the drug can possibly wipe out the body's ability to produce red blood cells within the bone marrow. Should a bone marrow wipe-out occur, death would follow in roughly twenty-one days, which is why we have been reluctant to use it.
"We do have one other possibility: one other route we might take. A special meeting has been called for this afternoon, when we will discuss the feasibility of this option....We are reluctant to use this option too, and would only do so as a last resort. It involves inserting a needle into the brain at different locations and into those regions of the brain that we know to be the most likely place to hold pockets of infection..... and if we are lucky....to drain off these pockets of infection. ... The problem with this... that if, we do get lucky and hit the pockets we are looking for, well then...the sterile needle we used when entering the infection will no longer be sterile when we remove it because it will be contaminated with the Salmonella bacteria. This would then mean, that we have a new possibility that when the needle is withdrawn, the contaminated needle will then "seed" the entire brain with the Salmonella. This is one of our options, but not a treatment we want to use. We have a nationwide telephone call going out for her, in order to collect all of the recorded case histories of Salmonella D Meningitis in the United States. As you know, Mrs. Duncan....It is very rare.... There are very few cases.....Mrs. Duncan....She needs to start the Chloramphenicol as soon as possible....You do understand the risks involved don't you." Any Questions.... No? "I will meet with you here in one hour with the results of our telephone research and you will have to sign another release form allowing us to proceed. We are running out of time. I am so very sorry." The door closed.
Tears followed. A decision had to be made.....What the hell to do! No one was on the floor. I couldn't find anyone to advise us. I managed to get a phone call through to my childhood friend Bob Riggins, who now headed up a Cardiology unit in Seattle Washington. He echoed Dr. Schumann's words. He said the he would be in Washington D.C. in two weeks’ time and promised to stop by and go over Gitty's case with us. Bowie had to go back and relieve the person who was baby-sitting our son. We hugged good-bye and I promised to call with any news or decisions. Left alone, It was now seven thirty in the morning. I saw a doctor outside of another patient's room. He was reading the patient charts which hung on their door. I walked up to him and asked him if he could read my daughter's charts....that I had to make a big decision and I really needed some help. His name was Dr. Sydney Ross, whose specialty just happened to be "communicable diseases." Without hesitation, he walked into the enteric isolation ward, took up Gitty's charts and began to review her case. He advised me in a low and steady voice to, “ Begin the Chloramphenicol immediately, at this point, we really have no other option..... but we will hold off on the third possibility of treatment: the roulette game of searching for pockets of infection. Don't worry...I will go down to this meeting this afternoon and sit in on it. I will follow her case for you every day that she is here"
And this he did....He came to see Gitty every morning at seven-thirty AM...seven days a week for the next three months. He did this on a voluntary basis and never missed a day or finding time in his busy schedule to get in touch with us and see how we were doing.
The release forms were signed: "cut downs," were recommended and performed on both legs. I-V needles were sewn up inside her legs. This operation would reduce the possibility of the baby accidentally kicking out one of the needles which would now have to be left in place for a long time....perhaps for two months.... or more. Already looking like a pincushion....Gitty was in a fight for her life.
I was not allowed to stay with Gitty, when the "cut downs" were performed. They tied down her arms and legs and strapped her head to the table. As I left the operating room, I could hear her cries through the cloudy panes of glass.....I knew that they were hurting her. She was crying for her Mommy and I was walking away. At this point, a very low point, and I hate to even remember that my thinking had been so scrambled...O' Yes...It was true....At that time....deep down inside myself, I made a firm decision, that if our baby had to face a lifetime of pain and misery, that I would somehow find a way to kill her. I did not yet know how or even at what point I would take this action...Awash in tears, I just knew that I would not let her continue in such pain forever. Then a nurse, an angel, appeared. Her name was Florence; a large colored woman of tremendous strength. She wrapped me up in her arms and said that she knew what the diagnoses was as soon as the doctors had taken us into the little green room down the hall. Rocking me gently back and forth she said: "I knows how you are feeling my Sweetheart, but you must never, never, never give up. God will get you through this....Just wait and see....She will be all right my darling. She will be all right." Those blackest thoughts dissolved, disappeared and never again returned. I was ashamed of myself for having had such thoughts, but the truth is....I did. Thank goodness I never had to make this choice or take such an action.
Gitty remained on Chloramphenicol for a course of twenty-one days round the clock. Her care was on a serious regimen …. Day after day with military precision. One morning we received a call to come down to the hospital for a conference, regarding the treatments for our child. It sounded ominous. We met once again in the dreaded little green room on the third floor at the end of the hall. "Good Morning, Mrs. Duncan....Mr. Duncan...Please, do sit down. I am so very sorry to tell you … that sadly … your child has experience a serious reaction to the Chloramphenicol and she does in fact, now have, Aplastic Anemia. We explained to you that this was one of the possible reactions to the drug. We are so very sorry.... so very sorry …We have done everything we can. I am so very sorry." We were shaken, exhausted and speechless.
Then....there was a knocking at the door. A nurse interrupted the meeting and asked to speak to the doctor. She said it was urgent. Stepping into the room, she handed him another clipboard. There had been a mix-up in the lab and we had been given the wrong report. Gitty did not have Aplastic Anemia after all!.....We were torn apart at this point with tears of happiness. The sadness of it was, that now, the error corrected, the doctors would have to tell another family the bad news for their child. Our hearts would break for them.
The Chloramphenicol regimen had been successful. By now, the results of the national phone call were in. The recommendation was to follow up with a repeated regimen of Ampicillin for another two months.....and hope that it would kill off any remaining pockets of infection this time.
I continued on with the wall murals, spending as much time with Gitty as possible; settling into daily hospital life. By the time I got home in the late afternoon, it was a mad dash to get to the grocery store. All stores closed at five o'clock. The late shopping hours we enjoy today, had not yet come onto the scene. Cooking the meals and spending make up time with McKay, reading bedtime stories and prayers before bed, rounded out the end of a long, long day. Bowie's schedule was just as busy as was mine during this period. We started off at 5:30 every morning. After doing the laundry, housework and getting things ready for the day, Bowie would leave for his work at school and I would get the baby sitter for McKay and then drive to Washington and meet with Dr. Ross at 8:30. After his updates, I would breast feed my child at: 9:30, 12:30 and 3:30 and then: home by four o'clock.
In between the feedings, I continued to paint the wall murals...Painting murals was great therapy and very relaxing. Painting eased the stress. Then it was home again and the regimen would begin all over again...This would go on seven days a week. For the first time in my life....Every minute of every day was scheduled. It was a forced regimen. I stayed awake as long as I could, to get in, as much as possible into every minute, of every day....trying to hold things together….. The weeks trudged by....One, two, three, four, five weeks.... six weeks, seven weeks. One more week passed and Dr. Ross announced, "You can take her home. I think we have beaten it this time! Take her home. We will have to watch her closely Sterett. I want to see her three times a week in my office. We brought Gitty home once more..time .... this time ... to stay.