Shura's Miracles

Next on the list of my children who have benefitted from the kindness of angels in the garb of professionals is Shura. (I don't know whether to include him among our children or not since he was with us for such a short while, but in the broader meaning of the word, he is our child even though Donnie could not even communicate with him in the beginning, Shura speaking no English and Donnie speaking no Russian.) Anyone who has read my book, Blest Atheist, knows the story of Shura in grand and glorious detail. I include it here in very brief form for everyone else and as part of the series of the positive things that other people have done for my children.

About Shura:
Shura was a dying child artist from Akademgorodok, Siberia, a place where I had done research, consulting, and teaching, and my second most favorite place in the world, the first being the little mission town I live in right now. (The picture on the left was drawn by Shura following his first surgery in the United States.) He was remarkably talented. As a very young teenager he had had two exhibits at Dom uchenykh (House of Scientists, which recognizes the leading academicians and artists in Russia, at that time the Soviet Union), poetry published in a collective volume, and a television documentary on his life. Shura was unusual in Siberia in that he was alive. Born with spina bifida during the Soviet era in a region with a paucity of antibiotics and no experience with these kinds of neurologic defects, accompanied by extremely harsh winters with temperatures dipping lower than 75 degrees below zero, and into a family of seven children (nearly unheard of in the USSR - the family required two side-by-side apartments in order to accommodate all its members), Shura grew up homeschooled by necessity in a country where such a thing was not only unheard of but also rejected out of hand. To make a long story somewhat shorter, through actions taken by Shura's godmother and me, Shura ended up in the USA for life-saving surgery. Here I was his guardian, and then he moved in with Julie Trudell (see Shura's caregivers below), and then began to live independently in Charlottesvile, Virginia as a chef and artist. While recuperating from his surgeries as a teenager, he was granted a residency at the Virginia Center for Creative Arts, the youngest person ever so honored. Last January he returned to be with his Russian family, now living in Moscow in the new Russia where antibiotics are more readily available and where Shura hopes to devote full time efforts to his art.

Shura's challenges:
Shura was born with lipomyelomeningeocele, a form of spina bifida, resulting in mild paraplegia (limited to no movement below the knee). He ambulated with crutches and, when allowed, on his knees. Over time, as result of untreated ulcerations that are typically for enervated skin, he developed gangrene in both legs, requiring an amputation of both. Ambulation is now accomplished with prostheses. Although he has a neurogenic bladder, he has refused to self-catheterize. Doctors were able to improve on his bladder functioning sufficiently to allow Shura close to normal bladder control. The lipomyeloneningeocele was not repaired at birth, as is usual in the USA, and until this day remains, now by choice, unrepaired; it has so far created no health damage. Concerns are that repair would result in hydrocephalus, which Shura does not currently have.

Shura's special caregivers:

Shura's family: These were the caregivers who kept Shura alive against all odds and then, when there was no longer any hope of keeping him alive in Siberia, handed him over to a stranger (me), fully trusting God to watch over him. (That faith was surely not in vain!) Shura's mother was a teacher, and she taught Shura at home; he is highly educated in spite of never having attended a regular school. She was also the faith center of the family. She knew that Shura was God's special child, and she made sure that Shura knew: he came to me full of faith. Shura's father, wounded in the war, walked with an energetic limp. A dreamer and printing press owner, he worked tirelessly on behalf of getting his son to the USA, gathering in money from visitors to Akademgorodok world-wide. When he delivered Shura to me, he handed me a large bag of coins and bills from many different countries, not enough to pay for anything of a medical nature but enough to help with clothing and feeding Shura. (Turning that sack of foreign money into dollars took an entire afternoon at Salts Bank, where foreign meant only Mexican -- everything had to be looked up in a book to ensure that the money was real.) A third member of Shura's family was his godmother, who had come to know me when I was lecturing in Krasnoyarsk. Ironically, she herself later developed cancer, and the doctors at the University of Virginia Hospital stepped in to take care of her, too.

Dr. Ronald Uscinski. Yes, the same doctor who played a vital role in the health and well-being of Noelle. Ron read Shura's x-rays and medical records originally and gave me guidance in how to proceed and what was needed medically. He then tirelessly filled out all the paperwork that the US Embassy in Moscow required to bring Shura to the USA three times. It seems that the embassy kept losing it. I had some doubts as to why the paperwork was getting lost, and the final time I noted that a copy of the fax was being sent to a resident of Moscow who could bring hard copy if needed. That took care of that. Hard copy was not needed. After examining Shura himself, Ron also stood by me and Shura when we made the decision not to repair the lipomyelomeningeocele for fear of causing greater damage, considering that Shura had already stabilized with the sac in place.

Julie Trudell. I first "met" Julie when she called me from UVA Hospital to tell me that she had tickets for Shura and me to come to UVA for Shura's surgery and a $500K for his care, all compliments of John Kluge. A mother of a son Shura's age, after our attempt at post-surgical follow-up from California (flying to appointments, instead of driving), she offered to take Shura into her house. Instantly, we had a triumvirate of motherhood: Siberian mother, Californian mother, Virginian mother. Early on, there was transcontinental, transatlantic communication among the three of us. Over time, Julie took on most of the late-teenage parenting. She and I have become like sisters over the past 15 years since that first phone call.

Dr. Vladimir Kryzhanovski. Vladimir simply appeared on the radar one day, telling us he had heard about a young Russian undergoing surgery at UVA. Vladimir was a cardiac surgeon on some type of exchange program at UVA Hospital, and he wanted to help. He was a ready interpreter in the beginning when Shura could not speak English. He inserted himself into the medical decision-making, e.g., insisting that the best kinds of prostheses, not the simplest (considered easier to maintain in Siberia), be made just in case Shura remained in the USA for a while (which he did -- 15 years). He spent hours talking to Shura about Russian and Ukrainian literature and other cultural phenomena, making sure that Shura never forgot his own culture (something he could do far better than I). Later, he helped Julie with parenting issues. (Oh, yes, Vladimir is still in Virginia.) My most vivid memory of Vladimir is the poignant picture of him walking beside Shura's gurney on the way to Shura's first surgery (the double amputation). I had to stop at the point that all parents have to say good-bye to their children, but Vladimir did not. He walked the rest of the way to the operating room with Shura.

John Kluge. Most of John Kluge's contribution is described above. I never met him. Shura never met him. He is now 94 years old and, the last we heard, suffering from cancer. I doubt that we will ever meet him, but Shura did paint a picture just for him. To give and not expect anything in return is true giving. The only requirement that John Kluge made of Shura was that the medical care was to be given at UVA and Shura followed by the Kluge Rehabilitation Center. You see, Mr. Kluge had given money to the hospital before and quite a bit of it. Mr. Kluge not only paid for the medical expenses, he also asked Dr. Gillenwater, who had just retired from the urology staff, to return for one purpose: to coordinate Shura's care. And then, to make sure that Shura was fully taken care of as time went on, he provided periodic money for clothes and painting supplies.


Shura's life has been full of miracles. The first was that he survived. A tethered cord, highly painful and if untreated highly damaging, typically accompanies a lipomyelomeningeocele. That was the second miracle; he has never had a tethered cord. The third miracle occurred when I happened to meet Shura's godmother in Krasnoyarsk and together set into place the series of events that would bring Shura to the USA at a time when the US Embassy was opposed to granting such visas. The fourth miracle was finding John Kluge as benefactor for we had no idea where to get the $50K upfront money that hospitals were requiring, let alone the $500K estimated total medical expenses (actual expenses have been nearly double that). Finding John Kluge was not easy: I had an address given to me my someone quite by chance from Charlottesville, Virginia, home of John Kluge -- except that was not his home; he lived in NYC. Nonetheless, the package and plea I sent to Charlottesville somehow found him in NYC within 72 hours of sending. The fifth miracle was the appearance of Vladimir in Shura's life -- who would have thought that there would be a visiting doctor from the Ukraine (in the former Soviet Union) just at a time when Shura needed translator, doctor-guide, and father figure in his life. The sixth and highly potent miracle was finding the overseer of the INS after a moleibin (Russian Orthodox prayer service) for Shura, a person who no longer attended that church, did not know about Shura's moleibin, and was 100% situated such that he could help with all visa and green card issues (and did); only later did we find out that this person was a convert who had been the recipient of a miracle himself (see Miracles in Real Life).

In the case of Shura, I often wondered, given all the miracles, anyway, why they did not happen faster. (Remember, I was still an atheist at the time, so I just considered it all serendipity, assuming that if there were a God, it would all have happened instantly.) Only now I understand. The journey was clearly more important than the destination. It was not the time for miracles that was needed. It was the time for people to see the miracles and to be part of them, the time to expand Shura's blessings beyond one young man to dozens of people worldwide.

Yes, indeed, Shura’s life has been full of miracles. Where there could have been great sadness, there has been great hope and joy. There has been only one stain on all of this: me. As an atheist at the time that all of this was taking place (Boy, could I make up excuses and shaky explanations for the series of miracles that rolled out before my very own eyes!), I set a poor role model for Shura, and I was, for him, a role model. As a result, he chose to abandon his faith for my atheism. There was logic, in both our minds at the time, for his choice. I was the one, in his mind, who had pulled him from Siberia and saved his life. He really did not understand that I was only the conduit that God chose and that God could have chosen another. Why would God send a strong believer to an atheist or allow that atheist to discourage the faith of His believer? That question, I suspect, will never be answered. I don’t really need an answer. I am just trying, somewhat unsuccessfully, to deal with the regret. (It is one of those situations where we know that God forgives us but we find it difficult to forgive ourselves – at least, that’s the way it works for me.) Shura knows of my conversion, and that has puzzled him. Perhaps there is hope for a reversion for him. (Please pray for that.) More important, now that Shura has returned to Russia, where care is at last sufficient for him, he will be living near his parents. I imagine that once again his real mother will take care of his faith.

Doah's Angels

Doah, helping Sue Scott with her large yard

Following the post on Noelle's Angels in Scrubs, this post tells the story of those who helped Doah. In Doah's case, both teachers and doctors were important, as was Andi Kush (but since Andi was introduced in the post on Noelle, I won't include her here except to say that her presence in Doah's life was as important as it was in Noelle's).

About Doah:
Doah is a 29-year-old young man, for whom doctors predicted only one possibility: demise before his first birthday. Some were very annoyed with me that I held onto hope that they considered unwarranted and naive. We survived a very shaky first 18 months as Doah's tracheotomy, the treatment for his subglottic stenosis, clogged again and again, resulting in 5 clinical deaths, two of which included heart attacks that preceded apnea. We all had to be very good at CPR because all of those deaths occurred outside of the hospital, one of them in my arms as I was nursing him. I learned all kinds of creative techniques beyond traditional CPR to get Doah breathing again, and his older sister became the youngest person (age 9) the local Red Cross ever trained in CPR. It was necessary. If Doah stopped breathing while I was in the bathroom, someone had to help him. As a result of our acquired skills, Doah survived all those cloggings. In fact, he was the only trached child followed by Renboro Hospital that year to survive the winter. As for me, I was a doctoral student and a teaching fellow. After his tracheotomy surgery I could not find an appropriate babysitter, and so Doah went to classes with me. Where I was a student, he sat in a baby seat beside me. When I was teaching, I placed him under the podium. One of my students, watching the difficulties, later became a social worker, committed to finding better solutions for parents of challenged children. Doah spent most of his school years in special education, where he managed to successfully demand that a class of autistic children interact with him (when we left, the school set about looking for another Doah -- an extreme extrovert in need of daily speech therapy to add to the autistic class for the following year in the hopes of repeating that success). During high school years, he singlehandedly convinced the gym teacher to integrate his special education class into regular education gym with his football player "buddies." At graduation, he received a standing ovation and was the only student, other than the valedictorian, mentioned by name in the town newspaper. He was also voted "class flirt," the first time in the history of the school that a special education student had won a popularity award. Today, Doah lives semi-independently in a group home in Santa Clara. He works in a sheltered workshop and has a free enterprise "franchise" there for selling chips and soda. With my help, he published a book of humor that has gained a following in Russia, where a professor of psychology at St. Petersburg State University translated it into Russian, in Moldova, where its short, simple, funny texts are ideal for use as tests in ESL classes, and, to a lesser extent in the USA, where he was invited to the 2003 national book exhibition in Los Angeles. (He was quite proud of his "author" badge.) On two weekends a month, he stays with us and can be found wandering around town, photographing whatever event is taking place; several of his photographs have been published.

Doah's challenges:
Doah was born two months prematurely, but he had no major problems directly traceable to that early birth because he was a big baby (4 lbs) and the doctor had given me steroids during my five days of labor, developing Doah's lungs and avoiding hyaline membrane disease, which was then the leading cause of death of premies of that gestation. Over time, we found one after another after another birth defect that had not showed up immediately at birth, for a total of 18 birth defects. Initially, Doah failed to thrive, which turned out to be attributable to his inability to digest formula, which the babysitter fed him. My body had adjusted to nursing at night only and so formula was needed during the day. The solution we found was a babysitter who could wet nurse him, and during a two-week period when I was called to active duty because of a national defense crisis, she kept him round the clock. She watched him until he had his tracheotomy surgery. The most serious of Doah's birth defects was subglottic stenosis, a narrowing of his trachea to the point that he could not breathe; for that, he needed a tracheotomy, which he himself removed without any of the medical staff noticing while he was at Cincinnati Children's Hospital, awaiting assessment for a crichoid split or laryngeotracheoplasty to take care of the stenosis. This was a premature take-down of the tracheotomy, so we had to keep our CPR skills current until Doah gained more airspace in his trachea through growth. The next thing discovered was a hiatal hernia; he still has that and the reflux that goes along with it. Then, a bifid uvula (just a curiosity) and a submucous cleft palate came to light. The decision was made by Georgetown University Hospital doctors not to fix the cleft palate because Doah's chance of survival was too low. Instead, we arranged for daily speech therapy; it has helped to some extent. After that, Doah needed surgery for an undescended testicle, as well as a bilateral myringotomy (ear tubes in both ears). Some of the other unfixable things discovered were malformed ears, a coloboma (failure of the eye to close in the back -- so rare that all of the eye doctors in training at Stanford University were paraded over to Lucille Packard Children's Hospital to look at it in case they ever saw another one), and extremely short stature. Over time and with testing, he was discovered to have ADD (some argued that he had ADHD, but Doah's hyperactivity was actually due to food allergies, specifically yeast). He also had 63 (!!) other kinds of allergies. When Doah reached the age of 12, Stanford University Hospital learned that some doctors were identifying a syndrome that Doah might fit: CHARGE Syndrome. The identification would not help Doah, however, because from what the Stanford doctors could determine Doah was the oldest survivor of the syndrome and therefore while his progress could inform doctors about what to expect with younger children, there was no way to predict what to expect with him. There were other, minor defects, some of them associated with CHARGE Syndrome, including a heart murmur, but the ones described above were the most troubling. Oh, and either congenitally or as a result of lack of oxygen from apnea and the tracheotomy, Doah ended up mentally retarded.

Doah's special caregivers:

Dr. Richard Paul was Doah's first pediatrician, and he was amazing -- a gift from God. He trusted us implicitly from his experience in working with our other children. If I said something was wrong, he reacted immediately because I usually handled run-of-the-mill illnesses without comment. He also trusted my decisions, the most dramatic of which was to steal Doah from Renboro Hospital and take him to Children's Hospital in Boston while the Renboro doctors were in court, trying to get custody in order to do a fundoplication that I was sure Doah would not survive and which was not a very successful kind of procedure, anyway. Since Dr. Paul twice supported me against the staff at Renboro Hospital (once when the doctors wanted me to stop nursing the baby for the convenience of the hospital staff and did not take into consideration Doah's failure to thrive on formula and once at a meeting that Dr. Paul himself requested with all the staff and me because he did not find the care coordinated or self-expanatory enough), I felt comfortable telling Dr. Paul about my plan to steal Doah. He said that while he could not condone my plan, if I were to carry it out, his partner's son was a resident at Boston Children's and could create a link back to the pediatrician. Armed with name and phone number, I went ahead and stole Doah in a rather dramatic scene, which had me fleeing down the stairs ahead of security personnel with Doah half-wrapped in a blanket, jumping into the idling car where Donnie was waiting for me on the curb outside the hospital in case we needed a quick getaway, and zipping off to the airport. We made it! And Boston Children's staff disagreed with Renboro's plans. Without an operation and with sensible nutritional care, Doah gained four pounds in one month and was discharged as a relatively healthy baby.

Dr. Colodny was the Boston Children's doctor who rescued Doah, stood up against the plans of Renboro Hospital, forewent an operation, prescribed a successful treatment, and, most important, listened to my experience of Doah and took that experience into account in prescribing treatment. I knew he would because he was the doctor who took down Noelle's colostomy (oh, yeah, I forgot to mention that she had had that in the previous post -- oops; too many medical issues to remember them all 30 years later) and who agreed with Dr. Moffett not to require Noelle to take prophylactic antibiotics (see "Angels in Scrubs"). Ironically, it turns out that he is a friend of Dr. Kennedy at Stanford who is Nikolina's attending physician.

Dr. Robin Cotton was the doctor at Cincinnati Children's Hospital who figured out the source of Doah's stenosis: aspiration of breast milk. Ironically, that which allowed him to thrive had caused the problem that was threatening his survival. More important, though, Dr. Cotton knew that Doah would outgrow the problem. At the time, it turns out that Dr. Cotton, who had recently immigrated from Canada, was the only doctor in the USA who knew anything about tracheal stenosis. Most important, when the Renboro doctors refused to give me a consult for a second opinion -- they were still mad about my stealing Doah and thwarting their custody attempt -- Dr. Cotton took Doah without any paperwork and somehow managed to get the insurance to cover the costs.

Dr. Doris Rapp is the author of the book, Allergies and the Hyperactive Child. Her book was our first indication that Doah's hyperactivity might be food-based. After seeing her on 20/20, I sent her Doah's records and asked what she thought. She called me at work. I was floored since she did not know me. She told me that Doah was too complicated for her but that Dr. Sydney Baker at Yale University could handle him. Unfortunately, Dr. Baker had retired. On the other hand, fortunately, Dr. Baker was a friend of hers. She had called him and asked him if he would come out of retirement to work with Doah -- and he had agreed! The kindness of strangers -- there are no words! Once again, I was floored.

Dr. Joan Landy was Doah's first teacher. She taught him to read when that seemed impossible. She taught him to sit still when that was clearly impossible; she asked our permission to use something that is no longer used: a trip-trap chair that encircled him, holding him still. She also named her very active puppy after him! A university professor prior to returning to teaching, she had taught the teacher of the autistic class that Doah subsequently attended when we moved to another district, and she helped that teacher understand Doah. She kept a daily journal between her and me so that any little thing could be taken care of as soon as it arose. Once, years later, when I called for advice, she told me that I would never guess what she was looking at as we spoke -- a picture of Doah that she had kept on her desk (she had become the head of special education) for a half-dozen years! When Doah graduated from high school, she had the announcement framed as a gift to him.

Sue Scott was Doah's last teacher. Although teachers in-between Joan and Sue had given up on improving Doah's reading skills, Sue did not and little by little, her efforts were met with success. If only she could have had him for more than his senior year! Doah's senior year differed considerably from other years. We had been forced to remove him from the Salts schools for fear that he would disappear (long story, not for this post). At the same time, I had been offered a one-year position at NASA in Houston. While I was trying to figure out where to send Doah to school -- in San Diego with Lizzie, his oldest sister, or in Houston with me -- my brother, Rollie, called and offered him a home there. So, Doah attended Hayes High School in Ohio. As the year ended, Rollie's apartment complex manager said that Doah could not stay after graduation because of rules against multiple adults in one household. So, a group home placement for post-graduation living and a sheltered workshop for learning to work had been arranged but was not quite ready on time. There would be an all-summer gap. The problem was widely known. Sue called me in Houston and offered to let Doah move in with her over the summer. I could not believe what I was hearing! I had come to know Sue well from my frequent trips to Ohio, and I trusted her completely. Such an offer, though, was almost unfathomable! Doah not only spent the summer with Sue, but once he and I had both returned to California, he spent a couple of work vacations with her. If he goes to Ohio to visit Uncle Rollie, he also goes to visit Sue!

So, once again, there is another side to the perhaps somewhat negative picture I painted on recent posts about Doah (see Doah, This Time and To Conserve or Not To Conserve). Clearly, some of the doctors made some very wrong judgments and as a result we almost lost both Doah and Noelle. Doah, especially, was difficult because he had a very rare set of anomalies, about which nothing was known in the 1970s. So, some of our frustration came from wanting and perhaps unreasonably expecting the doctors to know that which they did not and could not at the time know. But when it is your child, the expectations are high! What made everything manageable is that God sent us just enough brilliant, caring doctors to keep Doah alive and completely overwhelmed us with caring teachers and care providers who went so far beyond the pale to help us that the pale disappeared from view. There is no way we can ever repay these wonderful people. We can only pray for their long-term well-being and happiness and pass on to others the love that they, God's angels in professional garb, showed to us.

Noelle and Her Caregivers: Angels in Scrubs

Sue and Lou, both medical professionals, took exception to the way I portrayed doctors on my posts about Doah, especially the one about his recent emergency room visit, which made me momentarily revisit the question of whether or not we should conserve him (i.e. legally become his guardians since he is now an adult). I supposed my characterizations were a bit one-sided since I was dealing with some of the negative (from a parent's point of view) aspects of the emergency medical situation. Obviously, my children would not be alive today if there had not been some very special medical professionals in their lives. I promised Sue and Lou on that earlier post to show the other side of the picture. So, here is the first of my posts for them.

About Noelle:
Noelle is 33 years old, twelve years more than we were told she might live after she survived her first surgery, principally because crede, pushing on the abdomen and squeezing the bladder, killed off the bladder in about 20 years. When Noelle was three, intermittent catheterization was found not to introduce a sufficient number of bacteria into the urinary tract to cause infection and therefore could replace crede for keeping spina bifida children dry. She is now heading toward a long, full life. When she works, she does copyediting and has been a great proofreader of several of my books. She completed two years of college as an English major; Shakespeare has been her love since she was in grammar school. She lives independently in an apartment in Salts, 20-30 minutes from where Donnie and I live. She is mostly occupied these days with her significant other who fell into a diabetic coma, likely brought on by renal failure, in April 2006. From then until December 2008, he was in and out of a coma and hospitalized 5 hours away, which made it very difficult for her to see him because she cannot ride for five hours; she has to self-catheterize every four hours, and that complicates trips of any type. When he was awake and aware, he needed a breathing machine and made a request for extraordinary care; he did not want to have the plug pulled. Last Christmas (2008), he was finally stable enough to be taken off the respirator and transferred to a nursing home in Malek City, near Noelle. He still has no functioning kidneys and is not a candidate for transplant, so he needs dialysis three days a week. Given his medical needs, right now there is no hope of his ever coming home, but then Noelle had only a 50% chance to survive her initial surgery and her life expectancy was only 21 years. So, why should Noelle not have hope? At least, it is easier for her to maintain daily contact and provide emotional support when he is so much closer and not on a respirator. One measures good things by different instrumentations when one lives at the very edge of life.

Noelle's challenges:
Noelle was born with myelomeningeocele, the most severe form of spina bifida, and, as is sometimes present, she did have Arnold Chiari malformation. Soon after birth, she developed hydrocephalus (water-on-the-brain), for which a ventriculo-peritoneal shunt was placed. (Actually, her first shunt was ventriculo-atrial, ending in the heart instead of the abdomen, but somewhere along the line between shunt #1 and shunt #12, it became a VP type.) Around age 4, she had a grand mal seizure and was determined to have epilepsy although that is under control except for an occasional absence seizure, the greatest significance of which is that the state of California will not allow her to drive (and should not do so; she understands that). From birth, she has had a neurogenic bladder, the reason for the need to self-catheterize every four hours; otherwise, she would be wet all the time. She has also had a neurogenic bowel; we have tried a variety of bowel-management programs but the amount of enervation is too great for any of them to work, so she wears adult diapers. She is also paraplegic, having limited sensation between chest and hip and none at all below the hip, so until she went to college, she wore long-leg braces from chest down. Now, it has become easier for her to manage being in a wheel chair. We are delighted that she was able to stay in braces more than 20 years (doctors had suggested a wheelchair from age 5) because it gave her such a feeling of independence: wading in the ocean, swinging on swings, sliding down slides, and even roller-skating with her kindergarten peers. As a teenager, she was not the top-dog on the totem pole, ended up out of school for medical reasons for almost an entire year, and during that time began slowing pulling out her hair, a psychological disorder called trichotillomania. She still struggles with this and generally covers up the damage with a hat.

Noelle's special medical providers:

MAJ (USAF) Wayne Paullus was Noelle's first neurosurgeon. I was an Army officer stationed at Goodfellow Air Force Base when Noelle was born. The tiny town of San Angelo, Texas had limited facilities, and so Noelle was air-lifted 2.5 hours away to San Antonio's Wilford Hall Medical Center. This was in the early years of shunts and saving spina bifida children and well before they could be promised a full life. An Air Force hospital, in particular, was not highly experienced in such defects. Perhaps Noelle should have been sent, instead, to a children's hospital, in which case the surgery would have been a quick 45-minute sew-up-the-open-sac exercise. Instead, Dr. Paullus spent more than four hours in surgery. Since he had never seen a spina bifida case, he treated her as if she had been hit with a grenade or mortar. He spent hours isolating every single working nerve and made sure that it had a clean pathway and would not be damaged by his repair job. No pediatric neurosurgeon that I know has ever done that. As a result of Dr. Paullus's "ignorance," Noelle ended up as "the most mobile child in all of California with her level of lesion" (according to a neurosurgeon at Stanford University Hospital 14 years later). God bless you, Dr. Paullus! Where are you, Dr. Paullus? We have lost track of Dr. Paullus over the years. I had a US Air Force General, a former student of mine, promise to track him down. Now, I need to track her down so that she can track him down!

Dr. Scott Moffett was the senior pediatrician at Fort Devens, Massachusetts, a post to which I was assigned after short stints in Alabama and Arizona. Noelle was Dr. Moffett's special patient, and when Children's Hospital wanted to put her on prophylactic medication to prevent urine infections (typical for children with neurogenic bladders), he was concerned about her developing resistance to antibiotics from overuse and offered to check her urine daily if Children's Hospital agreed. The agreement was made -- and 20 years later, Noelle is in very good shape compared to nearly all of her peers who took the medication: many are now dying from simple diseases because they are antibiotic-resistant. While we were at Ft. Devens, Noelle developed whooping cough, a rather routine illness back then (now there is vaccination) except for children with Chairi malformation who often ended up with tracheotomies and/or brain damage; some even died. Dr. Moffett admitted Noelle into the tiny post hospital and had a second bed put in her room. It was his. Noelle had a rough time with the whooping cough, but Dr. Moffett was never far from her room during the day, and nights he slept on the second bed. Two weeks later, Noelle was home and well! (A few years later, the nursing faculty at Renboro Hospital, which specialized in spina bifida care among other defects, told me that they had had no Arnold Chiari children survive whooping cough totally unaffected the way Noelle had.) God bless you, Dr. Moffett, wherever you are.

Andi Kush was a special caregiver we met in Lower Burrell, Pennsylvania when we lived nearby and our children were attending Lower Burrell Christian Academy. (Yeah, I know -- odd that an atheist at the time would send her children to a Christian school. That decision was a no-brainer: the academics were the best around; for the same reason, I had sent our older daughter, Lizzie, to a Catholic school when we lived in Massachusetts. I counteracted the religious teachings at home, a not-so-great decision, the long-term effects of which I am still dealing with.) Andi was an extraordinary physical therapist. Noelle needed surgery before she could get braces and waited eagerly for them. In the interim, Andi made sure that her muscles were in great condition so that she would not have to build them up after surgery. The first day that Noelle got her braces, she was walking, thanks to Andi. (Later, Andi helped Doah learn to walk and pushed me into making contact with the doctor in Cininnati who ultimately saved him.) Andi was more than a physical therapist; she was my therapist -- always willing to talk about anything related to raising my special children, never judging or criticizing, always open to the impossible (like figuring out how to help Noelle learn to roller skate safely). Andi remained in touch for years, and I would sometimes call her for a sanity check, especially when someone was telling me that I should not expect Noelle or Doah to do something that I knew that they could with a little inspiration and a lot of perspiration. I lost contact with Andi when we went to Jordan, and that was a very sad loss. Her contact information no longer works. (Sniffle, sniffle!)

Our next stop after Renboro was Washington, DC, where I had been offered a position with the State Department, and Dr. Ronald Uscinski . Little did I know the night that Ron did shunt repair #9 on Noelle how deeply he would affect our lives. Noelle had ended up rather unexpectedly at Georgetown University Hospital, and Ron had been pulled out of bed at 2 a.m. for surgery with no access to any records, all of which were at Noelle's previous hospital. "OK, Mom," he said, "You're on. Spill out the contents of your memory." And that is how it was with Ron. He trusted that parents knew their children perhaps even better than the doctors who never lived with them. When I needed someone to support me and prepare all the international paperwork to bring Shura, a spina bifida child artist from Siberia, where he was hospitalized and dying, to the USA, Ron was the person I turned to, and he did not let me down. When I needed someone to support me in standing up to the neurosurgeon at the hospital in the USA where Shura ended up and not allowing repair of Shura's lipocele for fear that the surgery would make him worse off, Ron was the person I turned to, and he did not let me down. After all that, I could never forget Ron. Fortunately, I don't need to. I am on his e-mail distribution list for all his latest crazy ideas and maverick agendae!

Dr. Nina Scribanu, the only emigre Eastern European (Romanian, to be precise) doctor I know who was able to be licensed in the USA without going back to school, was another Georgetown doctor. The director of the Genetics Clinic, she had much interaction with the spina bifida clinic patients. The capacity of Nina to be compassionate was unbounded, and a good example of that is the evening that Noelle was admitted (I don't remember for what), and there was no bed available. The nursing staff put a blanket on the floor until a bed could be found, and Nina sat on that blanket with her for nearly three hours (of course, she would periodically nudge the staff to keep searching for a bed, which, of course, they were doing with great energy, considering that a doctor sitting on the floor after hours was constantly in their sight -- and not just any doctor, but the clinic director). Nina spoke excellent English and even better Russian (my Romanian is limited to reading very general kinds of things), and during the time we lived in Washington, she and I would go to Russian movies and then back to her house for tea, where her husband also spoke Russian. She kept in touch for a number of years, and when I learned that a lab in England had found a connection between Noelle's and Doah's defects, a weak X chromosome (we had been assured over and over for ten years that there was no connection, but I refused to believe that), Nina flew to England to find out more! A few years later when we were living in California, I was back at Georgetown University to lecture and for the sake of old times dropped by the clinic. The coordinator told me that Noelle's records were still active. "She is so special to us that we just are not yet become ready to archive them."

So, Sue and Lou, I hope that provides another, very different picture of what we have experienced from medical professionals in our lives. Yes, we have had some raw deals, but we have had some people who can only be described as God's angels.

Coming tomorrow: the angels that God sent to Doah!