Friday, October 11, 2013
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).
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 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.