The next blog entry from MassGeneral Hospital Down Syndrome Program Intern Eleanor Saffian: "I have wanted to be a genetic counselor since Charlie was born in 2001 when I was nine years old. Being the oldest of my siblings, I suppose that I was at an age where I could understand more of what having Down syndrome meant. When my parents first explained the condition to us they told us that Charlie had special needs and was just going to take longer to do certain things; things like crawling, walking, talking, reading, etc. I can still remember going to school after I learned that Charlie had Down syndrome and looking around at the children in my grade with special needs, wondering where my brother was going to fit in among these children. Would he be bullied? Would he die earlier? Was he going to have friends? Would he know that he had Down syndrome? It was because of my immediate interest and concern with Charlie’s development that I knew I wanted to work in a medical environment someday. As for when I got the idea in my head that I wanted to become a genetic counselor, that was when I learned about how my parents had been given the diagnosis of Down syndrome. My parents had not known that Charlie was going to have Down syndrome until after he was born, meaning that they found out postnatally. My Mom had been very sick when Charlie was born. She was on bed rest for twenty-three weeks leading up the pregnancy, which was hard on two accounts. One, being required to lay in a bed for months at a time is extremely boring and leaves a person feeling antsy and helpless. The second obstacle was that my Mom had four young children, between the ages of nine and two, who needed to be taken care of and entertained. It was not an easy time for my family. On June 17th, some time before my mother was expected to give birth, she went into labor. One thing led to another and Charlie was eventually born, about two weeks premature. He was immediately rushed to the NICU. The doctor eventually came back and explained to her that it seemed Charlie had Down syndrome and that they would run diagnostic tests to confirm. My Mother was then left to wait for the results of these tests without having ever been able to hold her newborn child. The tests came back positive, meaning that Charlie did have Down syndrome. Since Charlie was still in the NICU and my Mom was too sick from the complications of her pregnancy to be moved, she was unable to see her new baby who was in some other part of the hospital fighting for his life. Eventually, someone xeroxed a copy of the first chapter of a book that explained what Down syndrome was,placed it on my Mom’s bedside table, and left her to educate herself on this condition that her son had inherited. It wasn’t until forty-eight hours later, when my Mom’s health was significantly regressing due to stress and worry, that a nurse demanded that my Mom be able to see her newborn child. Eventually allowances were made to permit my Mom transport to the NICU where she was first able to lay eyes on her son. It was love at first sight. It is because of the way that my Mom was treated, how she was so disregarded by her health care providers and left in the dark on the situation and diagnosis of her newborn child, that I wanted to become a genetic counselor. I want to be the person who, when a baby is born with Down syndrome, is the one called to sit with the parents and help them to understand what Down syndrome is. I want to be able to explain how wonderful people with Down syndrome truly are, how they don’t have a mean bone in their body, how they see the joy in everything, how they can make you smile even when your crying, and how they thrive so brilliantly just at their own pace. I want to be that person. Through my time here at the MGH Down Syndrome Program, I have learned so much. I am only halfway through my time here and already I have learned more about my future than I have learned throughout my entire life. At times the learning has been challenging. Like I mentioned earlier, I have wanted to be a genetic counselor for more than ten years; it has always been my goal and always been the light at the end of the tunnel. But through my time shadowing genetic counselors here, I have learned a lot more about the field than I ever could have through the research that I had previously done. As I mentioned in my last blog entry, I cannot be a prenatal counselor. I just know that it is not the right fit for me. I have enjoyed my time in cancer genetic counseling and in the general genetic clinic (which is where I shadowed this week), but for some reason I still feel that something is missing. I had a conversation with one of my bosses, Dr. Skotko, this week. During that conversation he asked me why I wanted to be a genetic counselor. I explained to him that I wanted to be a genetic counselor because I wanted to take my passion for helping people and my experience with Charlie to support people with health conditions to live their life to the best of their abilities. Dr. Skotko then replied that this is a wonderful cause and can definitely be reached through the career of genetic counselling. But, this goal can also be obtained through other means; becoming a nurse, doctor, surgeon, therapist, etc. And he is right. At the time I could only interpret this news as upsetting; after all, I had spent ten years of my life saying that I was going to be a genetic counselor. And here I was, a year away from graduating, wondering if I was making the right decision. But after taking a step back and really thinking about what Dr. Skotko said, I now realize that he opened many doors for me instead of what I first thought, which was that he had closed the only one that I had ever dared to open. So now I don’t exactly know what my plan is; will I be a genetic counselor? A nurse? A therapist? And honestly, this whole “not knowing process” is a bit unsettling. But the reality is, I’m thankful that I had this realization, the realization that there are also additional ways for me to obtain my career goals, now rather than later, perhaps even after I was settled into a career as a genetic counselor. I now have a lot to think about in terms of where to go from here, but I know that without this internship, I would still be as close-minded and unaware as before." Feel free to read more at entrepreneurship.wfu.edu/news/summer_blog
Posted on: Mon, 17 Jun 2013 17:24:53 +0000
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