An Inspiration To Us All:
After several medical “false alarms” during my pregnancy, our son Cameron Robert was born on September 14, 1998. We were overjoyed and relieved to have such a perfect and beautiful child. We already had a three-year-old daughter and felt blessed to have had two amazing children.
Upon bringing Cam home from the hospital, everything seemed wonderful. However, as the weeks went by, he became increasingly fussy, agitated, and began arching his back. After a barium swallow test, Cam was diagnosed with mild to moderate reflux and was put on medication. The medication seemed to help but, most often, he was comforted by being held. That is what we happily did, even while he slept.
As Cameron approached 2½ months of age, we began to notice his eyes were crossing more frequently and that he didn’t seem to focus well, if at all. He laughed and smiled and it was obvious he recognized voices, but, he would never turn to the direction of the voice. It seemed as though he was reaching all of developmental milestones, except those pertaining to his vision. After seeing an opthamolegist, we were hopeful that the surgey he recommended would repair his vision, if the problem persisted.
In the meantime, Cam was plagued with upper respiratory infections. It seemed as though every time our daughter got sick, Cam got sick too, only he would be ill for weeks at a time. By the time he was 5 months old, his respiratory problems had begun to worsen. We decided to take our daughter out of preschool in hopes that it would help Cam recover. But, by this time, he had begun choking occasionally and seemed to have difficulties swallowing. Our pediatrician assured us this was normal and put Cam on antibiotics.
Despite all of his maladies, Cam was a very happy baby. He babbled and laughed. He loved his bath time and playing with his sister. He would roll over and over and was beginning to sit up. By this time, we knew deep down something just wasn’t right but the assurances of our pediatrician gave us hope that we were wrong, and perhaps just being overprotective.
As Cam approached six months of age, I remenber the day so clearly, I exicitedly decided to measure him to see how much he had grown. To my susprise he was 24″, the same as he had measured at four months of age. Somewhat frantic and worried, I called the pediatrician to see if I could come in to have him weighed and measured and to express my fears. Once again I was assured that this was normal and that it would be best to wait until his next check-up (three weeks later). So, we waited. Over the next two weeks the choking episodes became more frequent and he started to run a fever, along with his usual respiratory congestion. My husband took him to the pediatrician who watched as Cam choked and turned blue in her arms. She told him, for the last time, that this was “normal, he had an ear infection” and put him on antibiotics. Each day Cam seemed to get worse. I became fearful of driving him places or going anywhere because he might begin to choke. We began blowing in his face which seemed like the only way to get him to breath again. I couldn’t believe that this was “normal” as the pediatrician had assured us, so I finally called our children’s hospital nurse line. I was instructed to bring Cam to the ER immediately. Upon arrival, he began choking and was admitted immediately. I was amazed at the doctor’s acumen. In five minutes, he picked up on every symptom that I had been asking my pediatrician about for the last 6½ months. I felt relieved and confident that we would finally get the help we needed for our little boy to get well.
Over the next week, we were bombarded with various x-rays, blood tests, probes, etc. My husband and I split up and took “shifts”. I took the day shift and he took the night shift. My family not only cared for our daughter but took shifts of their own and were always there as well.
We did not want Cam left without a familiar face, even for a minute. Many doctors saw Cam daily and a possible answer from the neurologist was Cerebral Palsy. However, some of the other doctors were not quite comfortable with this diagnosis. This was the worst case scenario presented and we began planning ways that he would be able to “beat the odds” living with C.P. The next day the G.I. doctor recommended a fundoplication ( stomach wrap) with G-tube because of his inability to swallow. At this time, I had to stop nursing but began pumping and storing breastmilk for the nasal gastric tube already placed. Being told I could not nurse my son truly broke my heart because it seemed to be one of his only comforts, other than being held, in the hospital.
By this time, we had begun to feel like prisoners, wondering when we would finally get out and be able to take our son home, where he belonged. Since being admitted, Cam had already changed so much. He was miserable which made me feel like the hospital was to blame for the fact that his condition was worsening. As the doctors continued their quest for answers, a muscle and skin biopsy were done and a central line was placed. Surgery was scheduled for his fundoplication with G-tube. Then, due to fever, low platelet count, and aspiration pneumonia , it was rescheduled again and again. He was then placed on a respirator and sedated to keep him comfortable. Just when the pneumonia was clearing up, he was found to have a enlarged liver and spleen. Surgery was then postponed indefinitely. An oncologist was then called in and a bone marrow aspirate was done. It was then revealed to be a hereditary storage disorder. The geneticist quickly narrowed it down to one of two storage disorders. At this time we still had hope because we knew that some were treatable. After a couple of days of waiting, Cam was diagnosed with Gaucher’s Type II. We learned that there currently was not a cure and that it was only amatter of time before he died. On April 25, 1999, two days later and after 22 days in the ICU, Cam died in our arms.
Looking back on Cam’s last few weeks with us, it still seems so surreal. Everything went downhill so fast, and each day we felt our choices being taken away from us one by one. We were fortunate to have an exceptional team of doctors and nurses,who bent over backwards for Cam. We were fortunate to have friends and church members who visited daily, prayed, and supported us. Most of all, we were fortunate to have a family who put their lives on hold so that our son Cam was always surrounded by the people who loved and cared for him most during his all-too-short yet meaningful life. Through his strength and courage, Cam has been an inspiration to us all. Our lives are infinitely better for having had the chance to know and to love him.
Andrea and Robert Watson