By request, here is the post on how I stole Doah from Renboro Hospital (name changed) when he was a dying infant. (It is, unfortunately, very long, an excerpt from one of the book chapters in Blest Atheist. I hope it is worth reading to the end.)
Told by doctors at Renboro Hospital that Doah would die for certain, the trail ahead of us to bring him into adulthood seemed hopeless and far, indeed — except that I simply have no idea what the word, hopeless, means. To me, where there is life, there is hope. Clearly, though, to maintain that hope, we would have to do something about the attitude of the doctors and hospital in which Doah was being followed.
We did not have to think long. Matters quickly came to a head at Renboro Children’s Hospital. Our knock-down-drag-out fights with doctors there pitted parent against doctor in a war that was not going to serve Doah well. In June 1980, that cold war heated up rapidly. I refused to sign papers for a fundoplication, an operation that would repair Doah’s hiatal hernia at the risk of losing him because of his breathing difficulties from a subglottic stenosis (narrowing of the trachea) that were treated by a tracheotomy. (Nowadays children's with tracheotomies have decent survival rates; back then, most of the children died.) Doah’s pediatrician, Dr. Paul, was one of our strongest supporters. He would come to the hospital, mediate disputes, and provide me with his medical opinion. Dr. Paul researched the surgical procedure. He learned that the operation (in 1980) had only a 25% survival rate in cases like Doah’s and, if the patient survived, there was only a 50/50 chance that the surgery would take care of the problem. In any event, the surgery would have to be repeated every few years. (Over the years, the surgery success rate and survival rate has approached nearly 100%, but the surgery does still have to be repeated every five years.) Given these statistics, the pediatrician agreed with us that surgery was not wise.
Bent on what we assumed was their pursuit of medical training and the chance to do what was then a relatively new procedure, the doctors insisted that Doah have the surgery. Part of me wondered whether they just assumed he was going to die, anyway, and therefore he was a good candidate for “training” surgeons on a new procedure. In any event, the doctors did not accept my refusal to sign papers authorizing surgery and took the case to court, requesting that the court grant custody of Doah to Renboro Children’s Hospital so that they could do the surgery. We were not told about this court proceeding; apparently, we were going to be deprived of the opportunity even to be in courtroom and defend our rights as his parents. Shades of American democracy as it sometimes perverted by evil forces! I found out about this intention because I read promiscuously —- books and journals and articles and medical records: all Doah’s surgical reports, all the nurses’ notes, all the medical entries of any sort. And that is where I found it. In Doah’s four-inch-thick file was a scrawled note about our being unfit parents because we would not sign for the surgery and the date of the court proceeding. The date was only two days away.
What to do? A daring plan entered my mind: steal Doah from Renboro Children’s Hospital and take him out of state to Beanton Children’s Hospital where Noelle had been treated for her spina bifida and related birth defects three years earlier. I trusted the doctors because they listened to me. The doctors I knew there even liked me. I quickly found out more about Noelle’s former urologist, Dr. Colodny, and learned that while he was at that time specializing in lower GI problems, he had at one time worked in the area of upper GI problems. He could be Doah’s doctor, I reasoned. That thought comforted me, but we still had to get to Beanton.
We developed a step-by-step plan to steal Doah from his hospital room. I shared the plan, but not the details or the timing, with the pediatrician. He looked at me thoughtfully. Then he said, “I cannot condone what you propose. However, if you do happen to end up in Beanton, please be aware that Bob, the son of my partner, is an intern there. He can provide the link back to us and make the transition of records and information smooth.” He disappeared from the room and came back in a couple of minutes with Bob’s phone number. The pediatrician’s implicit encouragement was all that I needed to put our plan into action.
The next day, the doctors were in court, and we were at the curb outside the hospital. Charles kept the car running in a “standing only” zone. What I was about to do would not, could not, take a long time, we reasoned.
I walked into the hospital as I had on any other day. I had brought no clothes for Doah; they were in the car. I would not have time to dress him if I were to whisk him out unnoticed.
I took the elevator to the fifth floor and walked to Doah’s room. Visible from the elevator, the room was catty corner from the nurses’ station. The nurse on duty looked up and said hello, and I responded, just as if it were any other day.
I walked into Doah’s room. Good, there was no one else in there. Doah was plugged into an array of machinery. The machines did not provide life support. They simply monitored Doah’s condition. I could unplug them without doing any harm to him, but they would set off alarms at the nurses’ station. That would have to be the last thing I did. I looked in the supply cabinet where his medical “things” were kept and found the hand-held suction machine that was there for an emergency cleaning of his trach tube in the event that the electricity went out and he experienced a mucous plug. I would need that suction machine enroute to Beanton. It was small. I quickly shoved it into my pocket. Then I deftly untucked the blanket on the bed and wrapped Doah, who was wearing nothing but a diaper, in it. We were ready except for the half-dozen wires and electrodes attached to his body. With one smooth sweep of my hand, I disengaged all of them, setting off a half-dozen alarms simultaneously. With Doah in my arms, I slipped stealthily out of the room and bumped into the charge nurse, who was answering the alarms.
“What is going on?” she demanded to know.
“I am taking Doah with me,” I replied briefly while looking for an escape route other than the elevator, which was now clearly not an option.
“You cannot do that. He has not been discharged by the doctor,” she said, frowning and clearly tense.
“Certainly I can do that,” I told her evenly although I had to struggle to maintain a calm tone. “He is my son. I can bring him here, and I can take him away from here.”
“No, you can’t,” she insisted and then let the cat out of the bag. “The doctors are in court right now, getting custody of this child.”
“Right,” I said in the same steely, even tone. Lord knows how I was able to maintain the external calm with my heart pounding and adrenalin flooding through my veins. “They are in court now, and I am here now. They may have custody in the future, but I have custody now. I am taking him with me.” My eyes finally saw what I was looking for—a stairway exit at the end of the opposite hallway. I could reach it pretty quickly at a run.
“I’m calling security,” she said, as she headed back to the nurses’ station.
“Call whomever you want,” I replied and sprinted to the doorway. I dashed down the stairs, all five flights, as if they were a hill of snow and I was on a sled. I don’t remember actually stepping on even one of the stairs, but clearly I must have. Reaching the bottom, I ran as fast as I could to the car. I thanked all the stars in heaven for my fast legs, for all the intensive running-away-from-abusive-parents-wanting-to-beat-me practice I had had in my childhood that now stood me in good stead.
Thank goodness, the car was still there. Charles had not yet been chased away by a meter maid. I opened the door and jumped in. Breathing heavily, I urged Charles, “Go!”
We sped away, not home, but to the airport. I had earlier checked on the first flight out to Beanton. It was on US Airways, and we had about an hour to wait. It was an hour of agony, wondering if custody would be granted in the interim, whether the security guards would figure out that we probably had gone to the airport, whether the police would be contacted, whether someone would think to check airline manifests. Finally, the plane was ready to board. I walked on with Doah calmly, chatting with other passangers, as if every day I stole my child from the hospital and flew with him to some other city.
On board, I relaxed. The stewardess told me that Doah was cute, and she spent a few minutes casually chatting with me. The flight from Renboro to Beanton generally takes about 50 minutes. I had time to read the in-flight magazine and mentally prepare to meet my brothers. I had called Beanton Children’s. No beds were available until the next day, so my brothers, Willie and Keith, had promised to meet me at Logan Airport and take my home to Acton. We would spend the night on the farm and return in the morning when there would be room for Doah at the hospital. All was on track. All was calm.
All was calm, that is, until 30 minutes into the flight when the pilot announced that we were landing. Some of the passengers asked the stewardess what was going on and in what city we would be landing. “In Beanton,” she replied. “We just had a faster flight than usual because we have a medical emergency on board.”
We landed, and the stewardess asked everyone to remain seated while they took care of a medical emergency. Then she approached me and said she would help me out. “I think you had better take care of your medical emergency first,” I suggested, confused.
Now it was her turn to look confused. “We were told that you are the medical emergency,” she said.
It turned out that Renboro Children’s Hospital’s security office did rather quickly figure out where we were and had contacted the airline right after we had taken off. They had frightened the pilot into double-timing to Beanton by suggesting that Doah might stop breathing at any moment. The airline had made arrangements for my luggage to be retrieved immediately upon landing. They had also contacted Keith and Willie (“any party in the waiting area for the arrival of Elizabeth Mahlou”), lining up Keith and his car behind the ambulance that was waiting to transport us to Beanton Children’s where a bed had been miraculously found. Willie they had placed on the jetway so that he could talk me into taking Doah to the hospital should I not want to.
Literally only minutes later, Doah and I were in the ambulance, careening through downtown Beanton with sirens shrieking and lights pulsating and Keith and Willie in frantic pursuit. How fortunate that it was a weekday night when Beanton streets are more lightly traveled!
We arrived at the hospital at the same time. The admissions personnel looked at Willie and Keith in the coveralls they had been wearing in the field and, confused, asked, “Are you two medical personnel?”
“Heck, no,” answered Willie. “We’re just farmers from down Maine.”
Once Doah was in a bed on the ward, a resident appeared to take charge of him. “Renboro Children’s Hospital has been in touch with us,” he said, “and we have assigned Dr. Friedman to Doah.”
“No, there is some mistake there,” I responded, “Dr. Colodny will be his doctor.”
“Dr. Colodny does not handle lower GI patients,” the resident explained patiently.
“He used to,” I informed the resident, “and I bet he has not forgotten how to do it. Look, I am really tired. It has been a longer and more exhausting day than you could possibly imagine. It is nearly midnight, and nothing is going to get solved in the dark of the night. I am going home to Maine with my brothers. I will sign papers, giving you permission to put Doah on a life machine but nothing else should he stop breathing. You talk to Dr. Colodny in the morning, and I will come back around noon to talk to him about Doah.” I was certain that Dr. Colodny would take Doah as a patient although I had not been in touch with him. When Noelle had been a patient of his three years earlier, Dr. Colodny, as the head of the urology division, had taken her as his patient because she had some unique complications and he liked challenges. Doah would also be a challenge for him, and I did not think he would turn down a challenge.
The next morning, toward noon, I returned to the ward and tracked down the resident. “Dr. Colodny agreed to take Doah,” he said in a surprised, almost awed tone. “We have dismissed Dr. Friedman from the case.”
“I thought he would,” I responded. “I will be here round the clock so he can talk to me whenever it is convenient.”
Dr. Colodny came and greeted me effusively. He agreed with my risk assessment and dismissed the idea of a fundoplication. He set Doah up on a diet regime that would ameliorate the worst aspects of the hiatal hernia, and he had his bed set up on an incline to help nature take over some of the cure. Given the tracheotomy, he had the ENT staff look at Doah. There was not much that they could do about the subglottic stenosis, but they did bring up his case at a regional medical conference that was taking place at the time, unfortunately with no resolution or additional insights.
I gave Bob’s name to Doah’s young, pretty, primary nurse. Bob turned out to be handsome, and the nurse and resident soon started dating. Doah got the best of attention, and reports were sent very frequently to Dr. Paul, maybe more often than usual because it gave Bob and the nurse "required" time together.
A month later, Doah had gained four pounds. (In the month he was at Renboro Children’s Hospital, he had lost a half-pound and was down to eight pounds at the age of six months.) Doah was released, but this time, he was being sent home with an apnea monitor, so we no longer had to worry whether or not he was breathing. There was a machine that would tell us. (Renboro Children’s Hospital, when we had asked for a monitor, told us to tie bells to his shoes instead.)
Arriving back in Renboro, life returned to normal (for us). I continued teaching, taking Doah to my classes with me and placing him under the podium in his baby seat so that I could stop and suction out his trach tube whenever it became clogged. Yes, Doah still sported the tracheotomy tube that allowed him to breathe, staving off the death threatened by the subglottic stenosis. His care once again was coming from Renboro Hospital, the only local option, and the same dour prognosis persisted. Right before Christmas, I had a conversation with the chief of the ENT clinic that confirmed we would find no hope at Renboro.
“Now that we are back from Beanton and Doah’s general health is better, what can you tell me about a prognosis?” I asked.
“Look, you just don’t get it, do you?” the doctor responded. “His prognosis is days, weeks if you are lucky. My best advice to you is to accept the inevitable and consider how you are going to handle his death and the days after his death."
Well, that was not an acceptable response. I looked at the doctor coldly, as I quickly dressed Doah and said, “Neither you nor I can predict exactly what will happen in the long-term, but in the short-term I can very accurately predict that he will no longer be your patient.” With that, I walked out.
I took Doah home, left him with Charles, and returned to Renboro Hospital and Medical School. Flashing my graduate assistant identification card from the University of Renboro as if it were a medical school ID, I marched into the University of Renboro Medical School Library like an entire platoon about to take the next hill. Finding the ENT section of the library, I seized the latest volumes of the Otorhinolarnygology Journal. There I found my objective: Dr. Robin Cotton of Children’s Hospital of Cincinnati had written several articles on subglottic and other forms of tracheal stenosis, and he described cases where the children had survived.
I called him. He said he thought he could take down the tracheotomy and reduce the stenosis were we to bring Doah to Cincinnati. Were we, a poverty-stricken doctoral candidate and a forester-turned-art-school student, trying to raise four children, two of whom had multiple birth defects, to bring Doah to Cincinnati after just having spent our last dollar to get him to Beanton where the doctors had saved his life but could not repair his breathing?! It would cost more than $200, a sizable amount of money in the late 1970s, when my salary topped out at $800/month.
Nonetheless, full of hope, I counted on getting Doah to Cincinnati. I did not know how that would happen, how we would get the Chihuahua of poverty from nipping at our heels long enough to get to Cinncinnati and back, but I was confident it would happen.
A few days after my phone conversation with Dr. Cotton, I walked past the office of Dr. Ludmila Georgievna Koehler (now Sr. Ioanna in Jerusalem), a literature professor in the University of Renboro’s Department of Slavic Literature, where I was taking my doctoral studies and teaching Russian language courses to undergraduate and graduate students. Ludmila Georgievna motioned me to come in and shut the door. Then she handed me an envelope, saying “I heard from one of your fellow Ph.D. candidates that you have found a doctor in Cincinnati who might be able to help your son. Even by car, it will be an expensive trip for you. Here is $250 in cash. Pay me back when you can afford to do so and not before.” (Months later I was able to pay her back.)
Getting to Cincinnati, however, was not going to be easy in spite of Ludmila Georgievna’s, loan. This was, after all, my life. While it has been full of blessings, very little about it has been easy. In this case, a week before we were to leave for Cincinnati, I fell down a flight of stairs and broke my back.
As my body crumpled against the cement at the bottom of the wooden staircase leading into our basement, a warm, grey ether stole up to me, beckoning me to follow. Oh, no, I thought. I cannot pass out. Doah is upstairs and may get a mucous plug.
Shane was sitting on the porch stairs, waiting for me to bring his clean socks from the basement laundry room to him, and Noelle was in the back of the Pacer with no way to get out because her crutches were up front. The only one who could have helped, Lizzie, had already gone to school. I had been getting Noelle and Shane ready to drop off at day care. Doah, of course, was coming to class with me.
I tried to stand up but could not, so I crawled back up the stairs. I could not stand up, either, to reach our wall phone, so I kept pulling at the dangling cord until finally the phone fell off the hook. Experiencing great difficulty in breathing, I nonetheless managed to get the ambulance to understand where I lived.
Then I crawled to the living room where Doah was in his baby seat on the couch and struggling to breathe through a mucus plug. An increasingly intensive blue hue was spreading across his ash-tinged pink face. I could not stand nor could I reach Doah. Frantic, I beat my hands against the couch, trying to create enough vibration to knock Doah off, but it was to no avail. Three-year-old Shane heard the commotion and came in.
“Shane,” I said. “I have to reach Doah. See if you can get his seat off the couch.” He would have been too heavy for Shane, but it was worth a try.
Shane scoped out the situation instantly. “I can suction him, Mommy. I know how to do it.” Many nurses are uncomfortable suctioning trached children. How would Shane do it?
“Shane, it is a difficult thing to do, and the machine is on the wrong setting. I need the machine and Doah. Quickly!”
“I can’t lift Doah,” Shane replied, “but I can suction him. I can fix the machine. I can do it, Mommy, I can do it.” With that, he flipped the machine onto the proper setting and suctioned Doah, whose skin color immediately returned to normal.
“Good boy, Shane,” I said. “Now, go watch for the ambulance. I hurt my back. They will take me to the hospital.” Shane went out on the porch and soon returned with the ambulance medics.
Our house (and life) must have seemed like a circus to the medics. They put me on a back board and prepared to transport me. “What about the little boy,” one asked, referring to Shane.
“He can stay with our neighbor,” I answered. “He can show you where she lives. His sister can go with him. She is in the back of the car. The baby, though, has to go to the hospital with me.”
The second medic went out to the car. I knew he had found Noelle when he called back to his partner, “Hey, Herb! This one has braces!” Yes, that was us: broken back, tracheotomy, long-leg braces —- and more.
In spite of such an unpropitious start, Doah did end up in Dr. Cotton’s care in Cincinnati. Dr. Cotton was able to stabilize Doah and take down his tracheotomy. It was clear that had Dr. Cotton or someone like him been at Renboro Children’s Hospital, Doah’s early life would have been much different.
While we were grateful that Doah’s most serious problem was a thing of the past, we were angry that Renboro Children’s Hospital could get away with such cavalier treatment. I thought about all the babies who had died during the winter of 1980 -— at least ten. During the winter of 1981, at least one more had died, and very likely there were others I did not know about. I thought about a ten-year-old trached boy whose parents had had no life because for ten years they took 12-hour daily shifts watching him. I thought, too, of the arrogance of the doctors in trying to take custody away from Charles and me, writing in Doah’s records that we were unfit parents, and thinking that parents have neither the right to decide on treatment nor information to contribute to a decision. The more I thought, the angrier I became. Something had to be done to stop such behavior.
I am the type who when faced with a problem meets it with direct and intense action. When Ma beat me, as soon as I was big enough, I beat her back. If I heard that someone had said or done something untrustworthy behind my back, I would call that person and ask. So, too, in this case, I chose to go to the perpetrators of the crime: the staff of Renboro Children’s Hospital. We made an appointment with the hospital administrator. There we laid out our case. First, Doah could have died from any one of the mucus plugs or his five cardiac arrests. Suggesting that they tie bells to babies' shoes was an inane way to tell parents to monitor their trached children. Doah needed an apnea monitor, and we had obtained one from State College, Pennsylvania, thanks to the intercession of the Beanton doctors. All children with breathing disorders should get them. Second, the doctors at Renboro Children’s should not try to handle stenosis and related medical problems because they lacked experience in this area. Either they should refer the patients to Cincinnati, or they should bring someone from Cincinnati onto staff at Renboro.
Perhaps my expectations for Renboro Children’s Hospital really were exceptionally high. A few years later when we moved to Washington, D.C., the chief of ENT at Children’s National Medical Center told the resident not to let me leave until he had spoken to me. Actually, he did not want to speak to me. He wanted to “shake the hand of the mother who had found the only doctor in all of America who could have saved her child.” He was, of course, referring to Dr. Cotton, who, it turns out, hailed from Canada, had moved to the USA only a few months before I tracked him down, and was, indeed, the only doctor in the USA capable of curing tracheal stenosis at the time. Were my research skills really that good, or did compassionate God guide me in finding the articles by Dr. Cotton? And how was it that Dr. Cotton had recently moved to a part of the world where his skills were accessible to Doah?
Whether or not our demands were unrealistic, Renboro Children’s Hospital fulfilled them. At first, the hospital administrator hedged. He called in the chief financial officer, who told us that our medical bill would be written off. We said we were not after money and that we would somehow find a way to pay the bill over time. What we wanted, instead, was changed practices. The hospital administrator would not make any commitment other than to consider our words, and we left feeling like we had just turned in a half-done homework assignment.
To our surprise, then, less than two months later our bill for the monthly rental payment on the apnea monitor came with a return address in Renboro. I physically went to the office to pay the bill. I was curious. The clerk told me that the office had opened recently because of the large number of new referrals from Renboro Children’s Hospital!
Likewise, shortly thereafter, I received an excited phone call from the mother of the ten-year-old boy with the tracheotomy. “You won’t believe this,” she said, “but Renboro Children’s Hospital has a new ENT doctor on staff. He just came there from Cincinnati. He examined our son yesterday, and he thinks he can take down his tracheotomy.” She started crying. They were happy tears: ten years of living in an emotional hell and a physical prison were about to end. I wondered how she would handle the immense change and relief that she was about to experience.
When I think back on all the fighting we had to do for our children, certainly I feel lingering frustrations and even, at times, anger. How unfair such a life was, at times, to them.
Then I think better of those emotions. When you think you have a hard lot, all you have to do is scratch the surface of someone else’s life, and yours suddenly looks not bad at all. There are those who would say that God gives each person no more than he or she is capable of bearing, but I don’t think God gives us our burdens at all. Rather, in my experience, the burdens come from the workings of nature, our own ineptness, and the sometimes ill-intentioned behaviors of others. God steps in and provides the support when our load becomes an overload. Doah would not be alive today, in spite of my overload, had there not been many moments of divine intervention.
And then there is the matter of changed practices at Renboro Children's Hospital. Had we not experienced what we did and taken the follow-on actions that we had felt prompted to take, the near-100% death rate of trached children likely would have have continued for some more years to come. As it was, to the best of my knowledge, no more children died. For me, it is just another example of God turning bad into good.