Prior to discharge on July 13, the doctors felt that due to Rajan’s low blood sugar, he did present as an infant of a diabetic mother, although Raj exhibited no evidence of having diabetes. We all were puzzled about this, and even though Raj was healthy, she felt that she must have done something wrong for there to be so many abnormalities in our newborn son. Yet she did not share these feelings with me until several months later.
On July 13, Raj and I drove home with our new son. His feet were in the casts the doctor had placed a few days earlier. I focused on positive thoughts, assuring myself and Raj that everything would be okay. The three of us were going home together, and for that, we were glad. To have returned home without Rajan would have saddened our hearts, making the reality of his condition seem all too heavy and serious, and perhaps my attitude would not have been so cheerful, so hopeful.
A few days after bringing Rajan home from the hospital, his chromosomal tests came back, showing that his mental capabilities were normal. He seemed to be doing well, and we were glad his breathing returned to normal. After six weeks, Dr. Zenni removed Rajan’s casts, replacing them with protective shoes connected by a brace, a metal rod that kept his feet a certain distance apart from each other. Concerned, Raj and I thought, How is he going to move? But the doctor assured us, “Don’t worry. He will learn to move his legs together.”
We were relieved when Rajan learned to move his legs at the same time, but after two months, he became sick again. He drank very little of Raj’s breast milk or the Similac we gave him, and on top of that, he began having loose, watery stools ten to twelve times a day, causing him to become weak, dehydrated, and pale. This went on for several days, and after a consultation with Dr. Cooper, we put him on a liquid diet of Jell-O water, which helped with the consistency of the stools and decreased the frequency. We also changed his formula from Similac to Isomil. This change in diet helped for a while, but a week later his stools became loose again. He still refused to feed, always pushing the bottle away, and he began to lose weight. When he developed a sore throat with nasal congestion, Dr. Cooper suggested it would be best to admit him to the Children’s Hospital again. There, Rajan would be in good hands. The nurses and doctors would know what to do to improve his health. Raj and I were anxious every day, because we did not know what we were doing wrong or why Rajan’s health only persisted in worsening.
We admitted Rajan to the Children’s Hospital on October 5, 1977. He was three months old at the time, and although we knew it was best for Rajan to be there, Raj and I felt distraught as we returned home without him. At the same time, we looked forward to having our questions answered. Why did he not want to feed? Why did his diarrhea persist? What were we doing wrong?
We shared the news with the Cheemas on the phone, and at one point, Dr. Cheema said, “Kris, I understand what you guys are going through. But at the same time, you cannot neglect your other two sons.”
I knew Dr. Cheema was right, and with my work at Providence Hospital to think about, I trusted Rajan would receive high quality patient care. After all, he was hardly three months old and could not say what he needed or wanted, so they would need to monitor him closely. I believed that the nurses would be with him at all times, as parents are with their child.
Once again, a team of doctors began examining Rajan for signs of a specific syndrome. They analyzed the length and width of his bones, noting his long bones were mildly abnormal, the femurs appearing long and curved, and the radius and ulna thinner than normal. The ribs were also thin, but these findings, among others, did not lead them to any discovery or syndrome that could explain his abnormalities. All signs of myocardial ischemia had disappeared, but the doctors were concerned about his kidneys. When they found he had a urinary infection, they took an X-ray, which seemed to show that the right kidney was absent and the left kidney was smaller than normal.
Next, the doctors did a renal scan and found evidence of both right and left renal function, leading to the observation that the right kidney functioned much less than the left, and the left kidney was displaced. Consequently, Raj and I would have to alter his diet and lifestyle to keep him healthy. To preserve his kidneys, we were determined to make every effort with his long-term diet plan. Hopefully, in the years to come, scientists in the medical field would develop research that would help our son. In the meantime, we would do everything in our power to help him to stay healthy.
Several times when I visited Rajan at the hospital, I discovered he was dirty, and his stool was all dried out. The nurses had not taken care of him for the past four to five hours. When this happened a second time, I spoke to the nurses, and they apologized, saying, “Oh, I don’t know what happened. We were supposed to be watching him.”
