PROFESSIONAL ISSUES

A Life Changing Experience and Its Impact on MyProfessional Development as a Genetic Counsellor

Lisa Gordon

Received: 6 October 2011 /Accepted: 16 November 2011 /Published online: 2 December 2011# National Society of Genetic Counselors, Inc. 2011

Keywords Life changing experience

It was almost a year ago that my life changed, and onreflection now I can say for the better, as I value the simplethings more and enjoy every day. I am married with twoboys, who were 3 years and 5 years old at the time. Myfamily had just returned from a holiday and were feelingrelaxed after the recent Easter break. My husband had takensome extra days off, while I returned to work. He had beensuffering from some back pain for a while and physiother-apy was not helping. On the insistence of family, he had anX-ray on his back the day I returned to work. The resultsindicated a black area on scan and a tumour was suspected.What followed was a whirlwind of more tests, a CT scanconfirming a tumour at the base of his spinal cord, quitelarge in size (6 cm by 4 cm by 4 cm). We were in shock! Areferral was initially made to a neurosurgeon, followed byfurther consultations and management by an orthopaedicsurgeon who specialised in tumours of the spinal cord. MRIscans, biopsy and full body scan followed. I remember thedays vividly and how our life quickly spiralled into adownward twist—this could not be happening!

Those first days were a blur. I remember our familymembers visiting one by one, bringing food, muffins, andchocolate—all comfort food and great help for me. Wedidn’t know the extent of my husband’s illness at this stagebut were preparing for the worst. The most difficult timewas the waiting. Waiting for further tests (biopsy and MRIscans, and further appointments) and waiting to receivethese results, it seemed like months.

I vividly remember the day we went to see the orthopaedicsurgeon for the final biopsy results. It was a cool sunny day inApril. Our kids were being looked after bymy parents, andmyhusband’s parents drove us to the appointment, in case it wasbad and we couldn’t drive. We prepared in our minds for theworst—cancer, and the rest. It turned out that day, broughtmuch wanted relief—it wasn’t cancer and was likely to bebenign. We were rejoicing even though we were not throughthe woods yet—my husband needed major surgery, he mightneed radiotherapy and there might be complications such asloss of function and control of bladder, etc. These risksseemed minor at the time—it wasn’t cancer!

My husband had successful surgery in May; the tumourwas successfully removed and confirmed to be benign. Herecovered after 3 months of being out of work and is nowback to normal fitness. He has had his first 6 month check-up which was normal and the next one is now further apart.So after this turn in our lives, you might ask “Why is thisrelevant to Genetic Counselling? Why have you chosen toshare this experience?”

I have been a Genetic Counsellor working in prenataldiagnosis for nearly 14 years. Sometimes certain aspects ofthe work become routine and we often become “immune”or hardened by some of the emotional experiences ourclients face. I always felt I was an empathic GeneticCounsellor. However, this experience has shed some lighton the reality of illness, and the health scare has affected me

L. Gordon (*)Genetics Department, The Royal Women’s Hospital,Cnr Grattan St & Flemington Rd, Parkville,Melbourne, VIC, Australia 3053e-mail: lisa.gordon@ghsv.org.au

L. GordonGenetic Health Services Victoria,Royal Children’s Hospital,Flemington Rd, Parkville,Victoria, Australia 3053

J Genet Counsel (2012) 21:192–193DOI 10.1007/s10897-011-9438-x

personally as well as with respect to my counselling. I havelearnt that patients facing seemingly “routine” scenarios forus, such as an increased risk for Down syndrome, are goingthrough a huge emotional turmoil with regards to theirpregnancy. For instance, I think as human beings weinitially tend to think the worst, as it prepares us for the fall,just in case. Even though this work is often routine, for ourpatients it’s not, and the support we provide is vital. Ourpatients are counting on us—I remember listening to everyword from the surgeon. I recall searching the internet formore information. I appreciate this more now when mypatients tell me they have done the same. The support fromthe health professionals we received was invaluable—working in a helping profession and having the tablesturned around provided me with invaluable insight as tohow important our role is.

I now am very conscious of every word I use in mycounselling. The experience highlighted for me the realityof illness. It’s not just a number or a case we are seeing inour day to day work, but a person with very real worriesand anxieties. Now when I counsel someone, I find I amable to relate more to their grief and sorrow.

I often think about my patients when they are waiting forthat prenatal result—our period of waiting, especially forbiopsy results, was the worst. The literature in GeneticCounselling suggests that patients experience heightenedanxiety from the time of testing to waiting for results—nowI can vouch for this first-hand. It is certainly true. So have Ichanged my practice? Probably just a little by acknowl-edging that the period of waiting can be the most difficultwhen I am seeing a couple prior to testing, and thenacknowledging it at the end.

The support fromwork colleagues was amazing—it got methrough. I worked on and off during my husband’s illness. Iwas managingmy boys, a husband in hospital for a month dueto complications with an infection, and work. My work keptme sane. I needed supervision and debriefing in order to seepatients, but those experiences actually helped me. Some ofthe feelings I experienced were raw and I was highly aware ofthis.When someone talks about a traumatic experience I knowwhat they mean now, and it has helped me to have a better

understanding of what effect it can have on a person. I had aneed to share this experience as it unfolded—we kept family,friends and work colleagues informed. This gave me support.In counselling my patients I have always had a strong focus onassessing the support a couple have and also place importanceon the significant other (partner who is not pregnant). Does thecare-giver have support and someone to lean on? I had anincredible amount of support from family, friends, thecommunity and work which all helped me cope and getthrough this unsettling period.

In its entirety the whole experience has had a significantimpact on me and my family. As a family we have beenable to turn what was a negative and gruelling time into ahappy positive, as it has taught us more about life and whatwe value. It has given me a deeper insight into ouremotions and how we all deal with trauma in differentways. It has opened a door into the depth of human griefand emotion and how complex it can all be, not only for theimmediate family, but the extended circle of family andfriends. I am grateful for the insight my husband’s illnesshas provided me into the reality of illness and trauma andhow resilient we are.

The whole experience has left a positive mark on meand my family. We now have a totally differentperspective on life. Our boys are the most precious. Myhusband and I enjoy even the simplest of things, such asplaying with the kids in the backyard, or enjoying a glassof wine together with fine food. Professionally, it taughtme a lot about the impact I have on my clients and howwhat they are going through is so real. I feel that thisexperience has changed the way I empathise with mypatients because I have walked in their shoes andexperienced grief and illness from the other side of thetable. It has brought a new understanding of the realityof illness, health scares and the impact we have on ourclients as health professionals.

Acknowledgement I would like to thank my husband for showingme true resilience and teaching me about the importance of life andliving, and my two boys for keeping me smiling and just beingthemselves.

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