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C 2002) Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°

Genetic Counseling: A New Perspective Kathleen D. Valverde1,2

Genetic Counseling is a career that I stumbled upon. Prior to attending the genetic counseling training program, I had never met a genetic counselor, had never seen a counseling session, and never met someone affected by a genetic disease. My didactic training gave me a basic understanding of genetic diseases, but my true learning came from my interactions with patients and their families. It was during my subsequent clinical training that I grew to appreciate the complexity of emotions families grapple with when unexpected birth defects arise. I had compassion for these patients and consequently became more comfortable dealing with their emotions. Later in my career, I worked in a specialty clinic and was able to provide long-term supportive counseling to families. In that clinic I had the honor of working with a physician who had a life-threatening genetic disease, and his first hand account of life with this condition brought my understanding to new heights. My true defining moment as a genetic counselor came 14 years after my initiation into this profession. I wholeheartedly felt that I had experienced much of what there is to experience in this realm, until the day that I found myself on the other side of the table, as a patient. I experienced an ironic dichotomy, as I stood helpless and vulnerable in the NICU gazing down at my newborn baby. Before I could comprehend all that had happened to me in the previous few hours, I gave him the dysmorphology once over, and then my heart looked at him as the woman who had just given birth to him. My years of clinical training made me familiar with what to expect medically, but nothing prepared me for the overwhelming sorrow, anger, and helplessness that I felt. Welcome to Holland (Kingsley, 1987) resonated in my ears, and I knew that my life from this day forward would be changed forever. I had participated in all of the appropriate prenatal tests. The amniocentesis and multiple high-resolution ultrasounds yielded normal results, and yet I was standing before a dying newborn. I had become the statistic I often quoted, the 2– 3% general population pregnancy risk. All of the technology that I fully embraced 1 Genetic

Counseling Training Program, Arcadia University, Glenside, Pennsylvania. should be directed to Kathleen Valverde, Genetic Counseling Training Program, Arcadia University, 450 South Easton Road, Glenside, Pennsylvania 19038; e-mail: [email protected] msn.com.

2 Correspondence

285 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0800-0285/1 °

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Valverde

as a professional had failed me. I questioned whether knowing the diagnosis prenatally would have prepared me. I now know that there is no way to be prepared. I pondered this word “prepared” and finally understood that intellectually one may understand, but one is never prepared for the shock of seeing her or his newborn baby so critically ill. The ironic dichotomy was becoming clearer to me: the intellectual and emotional aspects are critical, and they are opposing forces that must be reckoned with. The enormity of the decisions that had to be made plagued me. Unfortunately, those choices that made most sense intellectually tore me apart emotionally. There was no rest for me; Tyler was my last thought as I fell asleep, and I feared for his life before I fully awoke. In my career I often found myself on the other side, discussing options and facilitating patient decision-making, but not until I had to make a life or death decision did I truly comprehend the enormity of this role. The decisions that we had to make as parents were more difficult than I can express. Bereavement services often group parents who had miscarriages, stillbirths, and neonatal deaths for counseling sessions, because “a loss is a loss” in their words. I disagree. Each situation brings unique issues with which families must cope. In the case of a miscarriage or stillbirth the expected birth and anticipated baby is not fulfilled, but rather replaced by a different and tragic event. In my mind, one of the biggest differences in neonatal deaths is the fact that parents are often faced with making medical decisions, giving consent for procedures, and observing their child’s treatment. So, in addition to grieving the loss, parents often spend time second-guessing their decisions and worrying if their child received the best medical care. Despite these differences, all of these parents face an agonizing decision about undergoing a subsequent pregnancy and the emotional burdens of trying again. Many people have commented on how courageous I was to undergo a subsequent pregnancy, but rather I felt fortunate. I have resources that many of my patients do not have: a thorough understanding of all of my options, tremendous emotional support, good health insurance, and a supportive work environment. I cannot even imagine how women undergo subsequent pregnancies without any of these benefits. They are the courageous ones. I often thought about many of my former patients and gained strength, hope, and faith from their experiences. Unfortunately, a vague recurrence risk and the limited usefulness of prenatal testing made my subsequent pregnancy difficult. Normal results with this third pregnancy did little to reduce my fears and anxieties. I often felt like this pregnancy was in a state of limbo. There were no baby showers or nursery preparations this time, and the final weeks were the hardest to endure. The delivery of a healthy baby was a wonderfully blissful event, but the anxieties still remained as the first year unfolded. It took almost a year to believe that he was healthy, and each developmental milestone was a bitter-sweet reminder of all that Tyler had missed. I took great pleasure in having my new son wear and use some of the presents that had been sent for Tyler. Although my first reaction had been to donate them all, keeping a few possessions and seeing a new healthy baby use them has brought some comfort to me.

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My 69 days in the NICU taught me many things, especially that there are no difficult patients, only patients with enormous challenges who need help. My greatest comforts came from the physicians who were honest with me and humble in their approaches to medical care. I respected those physicians who were willing to say, “I don’t know” and “I am sorry.” We often speak about the utility of valuefree language for patients. The language that we use as genetic counselors is so crucial to patients that we must always choose our words carefully. Even after my own experiences, I would never say to a patient “I know how you feel,” because I knew how I felt, but their feelings may be completely different. I learned the true meaning of the word resiliency and have become empowered to advocate for those patients who are in need of a little more assistance. The importance of having a genetic counselor navigate a course for patients in the turmoil of a large children’s hospital has taken on new meaning for me. I can now state that I have been on all sides of the genetic counseling experience, student, novice counselor, experienced counselor, direct supervisor for students, an assistant program director, and a patient. It was this last experience that crystallized in me the importance of providing psychosocial supportive counseling and patient advocacy. I never truly understood the vulnerability that one feels and how grateful one can be to those professionals who provide comprehensive care. I am glad that I stumbled upon this profession. I now have the privilege of training new genetic counselors to provide the human component to patients in an increasingly technology-driven hospital environment. I personally experienced the value of the genetic counseling skills that I learned, and I will continue to pass on these skills. Genetic counselors learn to balance hope and optimism in tempered ways when families encounter life-threatening crisis and terminal disease. New counselors must be encouraged to spend time getting to know their patients lives, feelings, and emotions because herein lies the true rewards of this important, essential, and demanding profession. Inevitably, when patients ask what I would do in their situation, I often wonder how I would feel or what decisions I might make in their position. While I am far from having the answer, I have a new perspective that will forever impact my approach. ACKNOWLEDGMENTS With thanks to our three sons, Steven, Tyler, and Alex. Steven, who kept me smiling through the difficult times, Tyler who taught me the true meaning of what is important in life, and Alex who restored my faith and brought new joys into my life. REFERENCE Perl Kingsley E (1987) Welcome to Holland. Cited in Canfield J, Hansen MV, Hawthorne JR, Shimoff M (1997) Chicken Soup for the Mother’s Soul. Deerfield, FL: Health Communications, pp 113–114.

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