P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
C 2002) Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°
Lifetime Continuing Education: Learning from My Son Stephanie A. Vokits Cohen1,2
The birth of my first child, Daniel, a rather large experience in itself, initially had a relatively and surprisingly small impact on me as a genetic counselor. Daniel has Down syndrome. I found out in the 31st week of my pregnancy, when ultrasound identified ascites and the beginnings of pericardial effusions—which prompted me to undergo amniocentesis. While waiting for results, I remember thinking, “This can’t happen to me.” Not only was I a genetic counselor who gave other people this type of news, but we also had a next-door neighbor with Down syndrome. Now that statistically just wasn’t allowed—two children with Down syndrome, not just on the same block, but next door to each other? Impossible! Yet, it was possible. Exactly 1 week after receiving the FISH results, Daniel was delivered by C-section. He spent the next 2 months in the NICU and came home on his due date. I went back to work a mere 5 weeks after Daniel came home—one of which he spent in the hospital following surgery for Hirshsprung’s. I felt fortunate to have had even that much time, considering I had been on bedrest for 5 weeks for preterm labor and then was out the entire 8 weeks he was in the hospital. To my surprise, it was almost a relief to get back to work. I was able to reclaim myself after concentrating so hard and for so long on my son’s fragile life. I continued providing prenatal counseling, and didn’t really change anything in the way I counseled. I fell right back into the same role I had left. Oh, it felt awkward at times, but I was able to distance myself, even when couples had a prenatal diagnosis of Down syndrome—and even when they terminated. When I described the features of Down syndrome during a session, it was almost like I was watching someone else do it for me. The only time this was difficult was when I had a couple who chose to terminate their pregnancy with Down syndrome—to me seemingly without really 1 St.
Vincent Hospital, Indianapolis, Indiana. should be directed to Stephanie Vokits Cohen, St. Vincent Hospital, Indianapolis, Indiana 46260; e-mail: [email protected].
2 Correspondence
281 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0800-0281/1 °
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
282
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
Cohen
having even given a thought to not terminating. It wasn’t their decision, it was their callousness and apparent lack of struggle; their minds seemed to have been made up before the baby had even been conceived, and it bothered me that they weren’t more reflective. Of course, this was just my impression, but it was hard because I wasn’t exactly about to discuss it with them. I never thought it would be fair for me to reveal that I had a child with Down syndrome to a couple to whom I provided genetic counseling. Even after a couple had a diagnosis of Down syndrome and decided to continue the pregnancy, I felt a little funny revealing this information. I was always afraid that it would make it difficult for the couple to share their true feelings of sadness and disappointment with the news. I always asked first if they wanted to meet other parents. But I came to realize that I couldn’t hide it, even if they didn’t want to meet other parents right away. What would happen when they eventually joined the Down syndrome parent group or saw me at next year’s Buddy Walk? They would think that I had been hiding this information . . . that I was ashamed. It was an awkward position for me. Daniel’s life had an even larger impact as I realized that I could offer so much more in a different setting. I had a unique idea of what it was like to parent a child with disabilities—things that can’t be taught: fear of every illness turning into another hospital stay, exhaustion of fitting in another therapy among an already packed schedule, having more doctors than fingers on both hands, concern about which school district would offer the best opportunities, joy and pride at every tiny little accomplishment, disappointment that nothing seemed “normal.” When Daniel was about a year and a half old, there was an opportunity to see a few pediatric patients with a new geneticist on staff. I really wasn’t looking to change my role, but did offer to help out by rotating with the other counselors. Seeing a few pediatric patients really made me realize how much I could connect with these parents. I almost felt guilty for not revealing that Daniel had Down syndrome, because they seemed surprised when I would ask such specific questions or make comments about things that other medical professionals probably never had thought to discuss with them. I made the move to providing genetic counseling in a pediatric setting. For the first time in my genetic counseling career, I felt like I could relate to where these parents were coming from, and could identify their needs and concerns more easily. Previously, when I saw pediatric patients I felt inadequate because I understood that I really didn’t know what it was like, and I felt guilty acting as if I knew what I was talking about when describing the course of a syndrome that I had never seen in another child. Now I saw more clearly that it didn’t matter that I had no experience with the syndrome itself, but I had some idea of what it was like to live with a syndrome at all. I don’t believe that you have to actually have a family member with a syndrome to be an excellent genetic counselor, but for me it was helpful. I turned a personal experience into a useful tool in my professional life.
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
ph131-jogc-375460
July 4, 2002
Lifetime Continuing Education: Learning from My Son
14:1
Style file version June 4th, 2002
283
I am still somewhat uncomfortable when staff reveal to new parents of a child with Down syndrome that I have a son with Down syndrome before I’ve had a chance to meet them professionally. I have, of course, told the staff that they can reveal this information, but I still sometimes worry that it will get in the way of my ability to help these parents. None of my fears have been validated, though. I have been told over and over by parents that they thought it was very helpful to know that I had a son with Down syndrome. I can’t say that I would have felt the same way. It took my personal self 6 months before I chose to contact another parent, despite my professional self having always encouraged parents to do this. Another thing that makes me uncomfortable is that parents assume I am some sort of an expert on Down syndrome. I explain to them that although I have book knowledge of Down syndrome and genetics from my training, most of what I have learned about day-to-day life is from my son, who is still quite young. The rest comes from other parents and the experiences they’ve shared with me. It is interesting, though. I had talked to new parents of children with Down syndrome for years before I had my son. However, I find that the questions and topics that we discuss now are different. We still discuss the shock of the diagnosis, dealing with friends and family, and the similarities of their baby to any baby. But, instead of spending the majority of time on how Down syndrome occurs and what percentage of children with Down syndrome have what complications, I seem to focus more on the developmental process, communication issues, the frustrations of the first year, and the overwhelming nature of medical appointments and therapies. The questions tend to be more about the educational system, financial planning and, feeding issues. I still haven’t sorted out how much of this phenomenon is me and my experiences, and how much is due to the fact that parents know that I have been in a similar place and therefore they ask different questions. People often comment, “I don’t know how you do it,” or “you’ve done such a wonderful job with your son.” These comments perplex me. I am just living my life. I think that you just do what you have to. I admit that I take the positive and move on, and not everyone can do that. But, I can say that those parents I know who have a child with a disability are just living their lives the best they can. I didn’t choose this path, but since I am here, I am moving forward. I don’t think about the deep impact that Daniel’s life has had on me on a daily basis—I think about what we’re having for dinner and is it bath night tonight, just like everyone else. I am not amazing, and have done nothing extraordinary with my son, though Daniel is extraordinary to me. I do stop from time to time, amazed at the impact Daniel, barely 4 years old, has had on our lives and of those around us. I wouldn’t say that I had a single defining moment, but rather a collection of experiences that have brought me to my current place as a genetic counselor. I don’t even know if I can say that these were individual events that have occurred. Rather, as I move through my life, these experiences flow over me like a stream and slowly carve me into who I am, personally and professionally. Occasionally,
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
284
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
Cohen
a rock hits, and a gouge is taken out, but most of it is a gentle change that I cannot pinpoint. I remember being offended when, just after receiving the results of my amnio, my OB suggested that maybe I would be a “better genetic counselor” for this experience. Not only was I angry that I had to experience it at all, but this comment suggested to me that I wasn’t a good enough genetic counselor before. I am finding that I am no better, just different. And that change is not complete, as I continue my life and learning from my son.
P2: FZN
Journal of Genetic Counseling [jgc]
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
C 2002) Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°
Lifetime Continuing Education: Learning from My Son Stephanie A. Vokits Cohen1,2
The birth of my first child, Daniel, a rather large experience in itself, initially had a relatively and surprisingly small impact on me as a genetic counselor. Daniel has Down syndrome. I found out in the 31st week of my pregnancy, when ultrasound identified ascites and the beginnings of pericardial effusions—which prompted me to undergo amniocentesis. While waiting for results, I remember thinking, “This can’t happen to me.” Not only was I a genetic counselor who gave other people this type of news, but we also had a next-door neighbor with Down syndrome. Now that statistically just wasn’t allowed—two children with Down syndrome, not just on the same block, but next door to each other? Impossible! Yet, it was possible. Exactly 1 week after receiving the FISH results, Daniel was delivered by C-section. He spent the next 2 months in the NICU and came home on his due date. I went back to work a mere 5 weeks after Daniel came home—one of which he spent in the hospital following surgery for Hirshsprung’s. I felt fortunate to have had even that much time, considering I had been on bedrest for 5 weeks for preterm labor and then was out the entire 8 weeks he was in the hospital. To my surprise, it was almost a relief to get back to work. I was able to reclaim myself after concentrating so hard and for so long on my son’s fragile life. I continued providing prenatal counseling, and didn’t really change anything in the way I counseled. I fell right back into the same role I had left. Oh, it felt awkward at times, but I was able to distance myself, even when couples had a prenatal diagnosis of Down syndrome—and even when they terminated. When I described the features of Down syndrome during a session, it was almost like I was watching someone else do it for me. The only time this was difficult was when I had a couple who chose to terminate their pregnancy with Down syndrome—to me seemingly without really 1 St.
Vincent Hospital, Indianapolis, Indiana. should be directed to Stephanie Vokits Cohen, St. Vincent Hospital, Indianapolis, Indiana 46260; e-mail: [email protected].
2 Correspondence
281 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0800-0281/1 °
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
282
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
Cohen
having even given a thought to not terminating. It wasn’t their decision, it was their callousness and apparent lack of struggle; their minds seemed to have been made up before the baby had even been conceived, and it bothered me that they weren’t more reflective. Of course, this was just my impression, but it was hard because I wasn’t exactly about to discuss it with them. I never thought it would be fair for me to reveal that I had a child with Down syndrome to a couple to whom I provided genetic counseling. Even after a couple had a diagnosis of Down syndrome and decided to continue the pregnancy, I felt a little funny revealing this information. I was always afraid that it would make it difficult for the couple to share their true feelings of sadness and disappointment with the news. I always asked first if they wanted to meet other parents. But I came to realize that I couldn’t hide it, even if they didn’t want to meet other parents right away. What would happen when they eventually joined the Down syndrome parent group or saw me at next year’s Buddy Walk? They would think that I had been hiding this information . . . that I was ashamed. It was an awkward position for me. Daniel’s life had an even larger impact as I realized that I could offer so much more in a different setting. I had a unique idea of what it was like to parent a child with disabilities—things that can’t be taught: fear of every illness turning into another hospital stay, exhaustion of fitting in another therapy among an already packed schedule, having more doctors than fingers on both hands, concern about which school district would offer the best opportunities, joy and pride at every tiny little accomplishment, disappointment that nothing seemed “normal.” When Daniel was about a year and a half old, there was an opportunity to see a few pediatric patients with a new geneticist on staff. I really wasn’t looking to change my role, but did offer to help out by rotating with the other counselors. Seeing a few pediatric patients really made me realize how much I could connect with these parents. I almost felt guilty for not revealing that Daniel had Down syndrome, because they seemed surprised when I would ask such specific questions or make comments about things that other medical professionals probably never had thought to discuss with them. I made the move to providing genetic counseling in a pediatric setting. For the first time in my genetic counseling career, I felt like I could relate to where these parents were coming from, and could identify their needs and concerns more easily. Previously, when I saw pediatric patients I felt inadequate because I understood that I really didn’t know what it was like, and I felt guilty acting as if I knew what I was talking about when describing the course of a syndrome that I had never seen in another child. Now I saw more clearly that it didn’t matter that I had no experience with the syndrome itself, but I had some idea of what it was like to live with a syndrome at all. I don’t believe that you have to actually have a family member with a syndrome to be an excellent genetic counselor, but for me it was helpful. I turned a personal experience into a useful tool in my professional life.
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
ph131-jogc-375460
July 4, 2002
Lifetime Continuing Education: Learning from My Son
14:1
Style file version June 4th, 2002
283
I am still somewhat uncomfortable when staff reveal to new parents of a child with Down syndrome that I have a son with Down syndrome before I’ve had a chance to meet them professionally. I have, of course, told the staff that they can reveal this information, but I still sometimes worry that it will get in the way of my ability to help these parents. None of my fears have been validated, though. I have been told over and over by parents that they thought it was very helpful to know that I had a son with Down syndrome. I can’t say that I would have felt the same way. It took my personal self 6 months before I chose to contact another parent, despite my professional self having always encouraged parents to do this. Another thing that makes me uncomfortable is that parents assume I am some sort of an expert on Down syndrome. I explain to them that although I have book knowledge of Down syndrome and genetics from my training, most of what I have learned about day-to-day life is from my son, who is still quite young. The rest comes from other parents and the experiences they’ve shared with me. It is interesting, though. I had talked to new parents of children with Down syndrome for years before I had my son. However, I find that the questions and topics that we discuss now are different. We still discuss the shock of the diagnosis, dealing with friends and family, and the similarities of their baby to any baby. But, instead of spending the majority of time on how Down syndrome occurs and what percentage of children with Down syndrome have what complications, I seem to focus more on the developmental process, communication issues, the frustrations of the first year, and the overwhelming nature of medical appointments and therapies. The questions tend to be more about the educational system, financial planning and, feeding issues. I still haven’t sorted out how much of this phenomenon is me and my experiences, and how much is due to the fact that parents know that I have been in a similar place and therefore they ask different questions. People often comment, “I don’t know how you do it,” or “you’ve done such a wonderful job with your son.” These comments perplex me. I am just living my life. I think that you just do what you have to. I admit that I take the positive and move on, and not everyone can do that. But, I can say that those parents I know who have a child with a disability are just living their lives the best they can. I didn’t choose this path, but since I am here, I am moving forward. I don’t think about the deep impact that Daniel’s life has had on me on a daily basis—I think about what we’re having for dinner and is it bath night tonight, just like everyone else. I am not amazing, and have done nothing extraordinary with my son, though Daniel is extraordinary to me. I do stop from time to time, amazed at the impact Daniel, barely 4 years old, has had on our lives and of those around us. I wouldn’t say that I had a single defining moment, but rather a collection of experiences that have brought me to my current place as a genetic counselor. I don’t even know if I can say that these were individual events that have occurred. Rather, as I move through my life, these experiences flow over me like a stream and slowly carve me into who I am, personally and professionally. Occasionally,
P1: GCP/GCY
P2: FZN
Journal of Genetic Counseling [jgc]
284
ph131-jogc-375460
July 4, 2002
14:1
Style file version June 4th, 2002
Cohen
a rock hits, and a gouge is taken out, but most of it is a gentle change that I cannot pinpoint. I remember being offended when, just after receiving the results of my amnio, my OB suggested that maybe I would be a “better genetic counselor” for this experience. Not only was I angry that I had to experience it at all, but this comment suggested to me that I wasn’t a good enough genetic counselor before. I am finding that I am no better, just different. And that change is not complete, as I continue my life and learning from my son.
