Introduction: While at Fernhaven in the Fall of 2021, my daughter, Monica, asked me to write about significant events of her childhood. This is the second of three of the resulting stories.
CHILDHOOD DIABETES
We may not have become aware of the problem if we had spent the spring break of 1984 at home in Al-Khobar, Saudi Arabia, as we would not have noticed Monica’s frequent need to use the toilet. But this became an issue because we traveled to Egypt for Spring break. Toilets were not available at temple sites. On one occasion we had to have the cab stop in the desert so she could pee. Maura used her dress to shield Monica from view of passing cars. We also noticed that she was losing weight. This could be attributed to our eating strange foods in restaurants.
When we returned home to Al-Khobar I made an appointment for her to be seen at the King Faisal University (KFU) infirmary. Maura, went with Monica as I was not permitted beyond the doors which were posted “FEMALES ONLY”. The clinic had one woman doctor and she dismissed Monica’s symptoms as adolescent angst. She told Maura to ignore it, that it is common for girls of her age.
Monica’s condition did not improve. Her teacher at the Daharan Academy sent a note home with Monica saying that she was concerned about Monica’s health. Monica seemed listless and not as engaged as usual. I went back to the infirmary and spoke to the admitting nurse about the lack of improvement. I was told that the woman’s doctor at the clinic was a daughter of the king and that she will not be willing to see Monica again as she had given her diagnosis. The princes doctor would not want to admit she was wrong. The nurse advised me to seek medical help elsewhere. The KFU Hospital was the only other medical facility in our small town. I was an employee of King Faisal University (KFU), however, I would have to have a referral from the infirmary before Monica could be seen at the KFU hospital. The nurse told me that the woman’s doctor at the infirmary would not give Monica a referral. I approached my friend, Dr. Timor Sumer, with my dilemma. He was affiliated with the KFU Hospital. He looked into it and reaffirmed the opinion of the infirmary nurse, that if the doctor at the infirmary diagnosed her with a behavioral disorder rather than a medical condition, she could not seek a second opinion at the University Hospital. Timor also thought that it could be a case of adolescent anxiety. However if it would make me feel better, Timor would bring a specimen bottle home and Monica could pee in it. He would take it to the hospital lab with a fictitious name on it and get back to me with the lab results. This we did. But I heard nothing back from Timor. After several days of waiting, I called him to ask about the urine test. He apologized, saying something about the stack of paper on his desk and not recognizing the fake name on the lab report. He promised to look into it when he returned to his desk. Early that afternoon, while I was teaching, the school secretary came to my classroom saying “You received a call from a doctor. It was about your daughter. It sounded urgent.” I excused the class and went to the office to use the phone. Dr. Sumer answered my call. He said, “Monica has diabetes. Her blood sugar was elevated at 700.” He said, “You should bring her to the hospital.”
Recognizing that the sample was taken nearly a week earlier, I panicked. I went directly to my car and drove to her school. I took Monica out of her class and drove directly to KFU Hospital. On the way I explained what was happening. Her only question was “Daddy, Am I going to die?” I assured her that while she had a serious condition, she would not die.
When diabetes is detected this late in onset the patient has been gradually starving. Monica was very thin but not emaciated looking. The clinician put her on a diet proscribed for victims of starvation. This required a gradual increase in calories over several days. With the gradual increase of food she received an increasing doses of insulin. Monica had not been interested in eating for the past month. But with the insulin and limited diet, she was ravenous. I remember the anguish I felt seeing her searching her hospital bed sheets for crumbs of food dropped after she had devoured her meager meals.
In addition to the relief of seeing Monica slowly return to her normal self, there were two other pleasant aspects of her hospitalization.
The first of these was an intern who took an interest in Monica’s case. She was extraordinary because, at that time it required great intelligence, independence, and perseverance for a Saudi girl to become a doctor. She was especially interested in our visit to the KFU infirmary. She questioned me about our visit there and about my being rebuffed when I sought to have Monica seen a second time. She looked into our infirmary visit and told me later that the princes doctor there had not called for a urine sample when Monica went for her exam. Had this routine test been done, she would have been alerted to Monica’s diabetes. This young doctor in the hospital was concerned that women at the university were receiving their medical care from an incompetent physician. It was clear that she faced a tricky situation. If it were anyone else she could have made the case that the lousy doctor be fired. But the doctor in question was the daughter of the king.
The second pleasure, if it could be called that, was the five-year-old boy who wandered the halls of the hospital while Monica was there. He was a friendly boy who would occasionally come to Monica’s room to visit her, even though they could not converse. He spoke only Arabic and Monica only English. He was the child of a Bedouin goat herder who lived far out in the desert. The boy had been bitten by a desert viper which, for the Bedouin, meant certain death. The boy was bitten while the Bedouin’s brother was visiting his camp. Since the brother was driving through Al-Khobar on his way to his home, he took the dying boy to the KFU emergency room. Certain that the boy would die, he left him there and continued on his way. The boy was given anti-venom and survived. But no one could be reached to claim him. So the hospital became his home. I later learned that the boy and one of the nurses developed a mother-son relationship. She was eventually allowed to adopt him.
Several years later, I asked Timor about the young woman doctor who had taken such a keen interest in Monica’s case. He told me that she had resigned from her post at the hospital and given up her medical carrier because she could not find a Saudi man who would marry a woman, who was above his status.
An unpleasant aspect of the stay at KFU Hospital was dealing with Monica’s Turkish Endocrinologist. He had been reading about doctors who had been able to extend the period in which the child’s pancreas would produce insulin through a regime of diet control and alternative medications. This extension would not be for a long time, perhaps a month, after which she would be required to take insulin. It would be necessary that she stay in the hospital under his strict dietary supervision. I declined his proposal so that Monica could return to her normal life as quickly as possible. He then told Monica “Your father doesn’t love you or care about your treatment.” My feeling was that he cared more about getting an article published than the welfare of his patient.
Maintaining Monica’s treatment regimen was tricky in Al-Khobar. It was a small town with only a couple of pharmacies. The supply of syringes was spotty, on one occasion there were no insulin syringes available. My only option was to buy large syringes. When it was time for Monica’s insulin injection that evening she rebelled at seeing the large syringe and long needle which I was about to use.
More critical than syringes, was the supply of insulin. The standard treatment at that time, was with pork insulin as pigs were the domestic animal with insulin which most closely resembled that of humans. However because of the Moslem prohabition of pork, the prescribed insulin was not allowed in the Kingdom. The only insulin available there was from beef. We were advised that beef insulin was likely to cause scaring and subsequent loss of injection sites. Consequently it was necessary to change the site each time she received an injection.
At the end of the school year, Maura and Monica flew to Boston so that Monica could attend a week long program at Joslin Clinic to evaluate and stabilize her diabetes. The whole family returned to Portland for the Summer break that year. We enrolled in an educational workshop for children diagnosed with type I diabetes. Monica was especially focused on everything we were being taught. Monica practiced giving injections into an orange until she was able to feel confident about giving them to herself. While the other children sat quietly through these lessons, Monica had many questions. Following that workshop, at age 11, she took over the management of her glucose testing and insulin injections.
Copyright 2021, by Theodore “Tod” Lundy, Architect