PSYCHO-ONCOLOGY

Psycho-Oncology 12: 91–94 (2003)Published online in Wiley Interscience (www.interscience.wiley.com). DOI: 10.1002/pon.652

BONE MARROW DONATION IN CHILDHOOD:ONE DONOR’S PERSPECTIVE

GURPREET PARMARa, JOHN W.Y. WUb and KA WAH CHANc,*aSchool of Medicine, The University of Western Ontario, London, Ontario, CanadabDepartment of Pediatrics, The University of Calgary, Calgary, Alberta, Canada

cDivision of Pediatrics, The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA

SUMMARY

Allogeneic bone marrow transplantation is an established treatment modality for leukemia, hematologic disordersand inborn errors of metabolism. while the focus of attention is the transplant recipient, the bone marrow donor(often a sibling) is both physically and emotionally involved in the process. Few reports have been written from thedonor’s perspective, however. One of the authors of this report (G.P.) was a marrow donor as a child, and he reflectson this experience at the completion of his first year of training in medical school. Copyright # 2003 John Wiley &Sons, Ltd.

Fanconi anemia (FA) is a rare, autosomalrecessive disorder characterized by hypersensitivityof the patient’s cells to DNA cross-linkingchemicals such as mitomycin. It usually manifestswith marrow failure at a median age of 8 years(Garcia-Higuera et al., 1999). The mean survivalfor FA is 16 years. Patients are also predisposed todevelop acute leukemia and solid tumors. Allo-geneic bone marrow transplantation is the onlytherapy that can correct the underlying marrowdysfunction and avoid subsequent leukemia trans-formation in FA. If an HLA-identical siblingdonor is available, a long-term survival of 75–89%have been reported (Flowers et al., 1996; Guar-diola et al., 1998).

Due to the regenerative ability of the hemato-poietic stem cells (HSC), bone marrow transplan-tation is the only organ transplant procedure thatroutinely utilizes a normal, healthy donor. HSCare procured from the donor by multiple aspira-tions from the pelvis. Prior to infusion of the HSC,the recipient receives supralethal doses of che-motherapy or irradiation to destroy the marrowand immune function. This produces significant

side effects. Dependent on the patient’s diseasestage, general health condition and histiocompat-ibility between the donor and recipient, a trans-plant-related mortality of 10–40% in the first 100days has been reported (Bearman et al., 1994).Each year more than 4000 transplants are doneworldwide for children under 18 years of age. Infact, most pediatric oncologists support the use ofminors as marrow donors (including researchprotocols), and endorse the validity of parentalconsent (Chan et al., 1996). The bone marrowdonor derives no health benefit from the process.So, what are the potential psychosocial conse-quences and risks to these minor donors? Themedical literature contains practically no informa-tion in this aspect. The following is an accountfrom one of the authors (G.P.) who reflects on hisown personal experience as a bone marrow donorfor his younger brother 12 years ago.

‘When I was 10 years of age, in the winter of1987, my family received an unexpected news.What we were told was a discovery that was notwelcomed, not sensible, not gentle, and simply notfair: my younger brother had a rare, life-threaten-ing condition known as Fanconi anemia. His onlyhoped for survival was a bone marrow transplant,and I was a human leukocyte antigen (HLA)match. The year that followed was filled withturmoil as we struggled through my brother’streatment and toward his eventual cure. It was a

Copyright # 2003 John Wiley & Sons, Ltd. Received 22 June 2001Accepted 30 April 2002

*Correspondence to: Division of Pediatrics, The University ofTexas M.D. Anderson Cancer Center, 1515 Holcombe Blvd.,Box 87, Houston, TX 77030, USA. E-mail: kchan@mdander-son.org

journey that I will never forget. To this day, I stillrecall clearly all of my thoughts and emotionsduring the ordeal.

After completing the first year of medical schooltraining, I have a better appreciation of the medicalaspects of my experience and now ammore capableof conveying the emotions from my donation.Therefore, I wish to add this report of my personalexperiences to increase our understanding of whatbone marrow donors experienced while involved inthis aggressive treatment modality.

When my parents told me that I would be thedonor for my brother’s transplant, my initialreaction was to cry. The news was wrapped inmuch uncertainty and all I knew was that manyneedle sticks lay ahead of me, a fact that did notplease me at all. Worse, we had originally beentold that my sister was the match and I wasrelieved that I did not have to go through with thefrightening procedure of marrow harvest but thatmy brother still had hope for survival. so, when itwas announced a short time later there was amistake because of a confusion of our names and Iwas to be the donor, my fear was compounded bymy shock. This mix-up made the situationunnecessarily stressful for me. My parents andmy physician were very kind to me and I wasbriefly told what was to be done to me. However, Iwas not given a lot of opportunity to ask questionsand was never encouraged to do so. This may berelated to the culture of an Asian family and theexpectation to help one’s sibling.

It did not take me that long, however, to acceptthe role I had been assigned, though my concernabout needles would never go away. The trans-plant was scheduled for the following summer, andin the months preceding it, I tried not to thinkabout it very much. Aside from undergoing someroutine blood testing, my daily life changed little.My parents did an excellent job of keeping life inthe household as normal as possible, However, theextreme stress, anxiety, and fear they enduredduring that time was to some extent felt byeveryone in the family. I felt scared and over-whelmed by the situation.

There were times, when I had to go for anotherblood test, that I did resent my situation: I felt thatbeing put into the role of donor was an unfairburden. Having those thoughts made me feelunsettled. The only answer I can turn to is thestrength I found in my family, and the fact thatabove anything else, my parents did explain clearlyhow helpful I could be to my brother. Even today,

with added insight, I am still somewhat ashamedto have ever thought so selfishly, even thought I dofeel they were very understandable emotions tohave, and probably not at all uncommon.

As the day of the transplant crept closer, Ibecame more nervous and scared. Mostly, I keptmy emotions to myself. I felt that I should notcomplain as what I was going through was minorwhen compared to what my brother has to endure.I recall having a clear sense of the pressure, evensubtly, that surrounded me. Somehow the life ofmy brother depended on my bone marrow, and Ionly had a superficial understanding of why thatwas. I desperately want not to disappoint myfamily, but did not know if there was anythingmore that I could be doing. My natural shynessmade it more difficult for others to get a sense ofwhat insecurities I was having. Subsequently, myparents disclosed that not having to worry aboutme made it easier for them to focus on my brother.

The morning of the transplant, I was takendown to the operating room for the bone marrowharvest. As I sat waiting, I became increasinglynervous, but not truly frightened. My nurse toldme a story about a fireman who had done exactlywhat I was doing, except he had donated his bonemarrow to a stranger. That story made a bigimpression on me, and it settled me down. I feltrelieved that after the transplant my brother and Iwould share the same marrow, and he would becured. In reality, there was the possibility that mybrother’s body would reject my bone marrow, andour only hope might not work. It was a few weeksbefore we found out that the transplant had been asuccess. I remember how excited all my family wasat the news. I, however, had felt confident from theinstant I awoke from the anesthesia that mybrother would be fine, so to me the news wasalmost redundant.

It is interesting that at no point during histransplant did I think that my brother would dieor it might even be a remote possibility. At thattime, my experience with death was very limited.My grandmother was the only person I had everbeen close to who had passed away, and shehad been an elderly woman, sick for some timebefore her death. I could not see how my young,8-year-old brother could suffer the same fate. Thatchildren die, too, was something I could notcomprehend; maybe something I did not believe.Actually, up to a quarter of allogeneic bonemarrow transplant recipients may die during theinitial hospitalization.

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Life during my brother’s transplant was not easyfor all of us. He was the focus of attention foreverybody. My parents were at the hospital mostof the time, and my sister and I were looked afterby friends and relatives. I returned to the citywhere we lived 2 months after my donation, butmy mother stayed behind with my brother untilthe end of the year. The loss of attention from myparents occasionally made me feel neglected orabandoned, but now I understand that thesituation called for all of us to make sacrifices,and the arrangement made perfect sense to me. Itwas not something to think about or dwell on,only something to live with.

In many ways, this experience first made methink about going into medicine; later eventssimply solidified my decision. Now after 1 yearof medical school, I am learning about the scienceinvolved in my brother’s illness and his treatment.Throughout the past year, I have come acrosstopics that in some way reminded me of myexperience: the skeletal anatomy of the pelvis, theconcept of B cell immune response to antigens, ora discussion of various hematological pathology.These associations do not necessarily make iteasier for me to learn the material, but they doprovide me with a greater appreciation for thescience of medicine, in much the same way that myexperiences as a donor have taught me about itshuman side. As I look back on my experience, Ihave a much better understanding of the biologicprinciples in transplantation. For example, I amallergic to several things, including milk, nuts,seafood and pollens. My brother, on the otherhand, had no reaction to any of these allergens.However, soon after he returned to school afterthe transplant, he developed significant swelling ofhis eyes and lips when he came into contact withwalnut. My family had not been warned about thepossibility that my brother might acquire myallergies following the bone marrow transplant,so the discovery that he had allergies was asurprise. Studies have shown that this transfer ofspecific food allergies is indeed a real occurrence,which can be verified by skin prick testing, IgEassays, and radioallergosorbant testing. (Agostiet al., 1988; Bellou et al., 1997; Saarinen, 1984;Tucker et al., 1985) Knowing how severe and lifethreatening allergic reactions can be, I am nowaware of just how serious that situation could havebeen. I cannot imagine how cruel it would be to afamily to have gone through a yearlong ordeal, tohave finally wrestled back their lives, only to have

them shattered by an unexpected, potentially fatalallergic reaction to a snack.

Recently, I had a chance to review the HLAtyping results of my family. This very complicatedsystem of genes determines the rejection andacceptance of allografts. The chance of beingHLA-identical to a sibling is 1 in 4. As I read thedifferent alleles and loci of each family member, Icould not help but think about just how significantthose test results were and how vastly different mylife would have been if the ink on them had beenonly slightly different. Today as I recall theconfusion surrounding the HLA typing of myfamily, I do not feel angry or disappointed,because I know that miscommunication doesoccur occasionally and is difficult to avoidcompletely. However, I do take away from it theunderstanding that even minor confusion or aslight oversight can have a major impact on thepatients and their families.

A marrow donor is placed in the awkwardposition of being a healthy individual undergoingnumerous tests and experiences what ‘sick’ peoplego through. But you can hardly complain, assomeone so close to you is in a much worsepredicament? However, you are unable to dealwith these struggles openly. To dwell on theconcerns and worries you have, as a patient, is toinvite a worse sense of guilt into your life. It is avery difficult balance, and to this day, I am still notsure how it was that I was able to cope with it.

As a bone marrow donor, my discomfort wasnot comparable to that suffered by my brother,but to me it was not insignificant. Amid theexcitement of intensive therapy, health careprofessionals must not forget that in a bonemarrow transplant two patients exist. Both deserveclear communication, special care and attention atall stages of the treatment process: from the timethat the donor is selected, through the actualtransplant procedure, and after the donor and therecipient are discharged. The donor should not betreated like as second thought. From my ownexperience, I think it is important to make thedonor understand the significance of his or herinvolvement. It was not simply something the childwas told to do; the donor should be made aware ofthe benefit and the contribution despite of thediscomfort. The donor may feel confused, scared,and helpless while in the operating room and therecovery room. The support that family membersand the childlife team provided in this situationcan be tremendously helpful.’

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Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 91–94 (2003)

Weisz and Robbennolt (Weisz et al., 1996)suggest that how the donor is affected dependson whether the recipient survives, how large a rolethe donor plays in making the decision to donate,and how old the donor is. We concur with theirassertion that more long-term empirical studies areneeded to establish an accurate picture of youngdonors. In addition, we recommend that everyminor donor to have a pediatrician to act as hisadvocate during the process of HSC donation.Age-appropriate explanation, including animationand pictures should be clearly communicated tothe donor, an all questions should be answered.The participation of child psychologists, socialworkers and childlife specialists will also beinvaluable to assist the donor through the tryingtime.

REFERENCES

Agosti JM, Sprenger JD, Lum LG et al. 1988. Transferof allergen specific IgE mediated hypersensitivity withallogeneic bone marrow transplantation. N Engl JMed 319: 1623–1628.

Bearman SI, Mori M, Beatty PG et al. 1994. Compar-ison of morbidity and mortality after marrowtransplantation from HLA-genotypically identical

siblings and HLA-phenotypically identical unrelateddonors. Bone Marrow Transplant 13: 31–35.

Bellou MD, Kanny G, Fremont S, Moneret–VautrinDA. 1997. Transfer of atopy following bone marrowtransplantation. Ann Allergy Asthma Immunol 78:513–516.

Chan KW, Gajewski JL, Supkis D, Pentz R, ChamplinR, Bleyer WA. 1996. Use of minors as bone marrowdonors: current attitude and management. A surveyof 56 pediatric transplantation centers. J Pediatr 128:644–648.

Flowers ME, Zanis J, Pasquini R, et al. 1992. Marrowtransplantation for Fanconi anemia: conditioningwith reduced doses of cyclophosphamide with radia-tion. Br J Haematol 92: 699–706.

Garcia-Higuera I, Kuang Y, D’Andrea AD. 1999. Themolecular and cellular biology of Fananci anemia.Curr Opin Hematol 6: 83–88.

Guardiola P, Socie G, Pasquini R et al. 1998. Allogeneicstem cell transplantation for Fanconi anemia. SevereAplastic Anemia Working party of the EBMT andEUFAR. Bone Marrow Transplant 21(Suppl. 2)S24–S27.

Saarinen UM. 1984. Transfer of latent atopy by bonemarrow transplantation? A case report. J Allergy ClinImmunol 74: 196–200.

Tucker J, Barnetson RS, Eden OB. 1985. Atopy afterbone marrow transplantation. Br Med J 290: 116–117.

Weisz V, Robbennolt JK. 1996. Risks and benefits ofpediatric bone marrow donation: A critical need forresearch. [Review] Behav Sci Law 14: 375–391.

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