Hong Kong Academy of Medicine. CC BY-NC-ND 4.0
COMMENTARY
No heart for paediatric heart transplantation in
Hong Kong
KL Hon, MB, BS, MD1; Karen KY Leung, MB, BS, MRCPCH1; CC Au, MB, BS, MRCPCH1; ZG Chen, MD2
1 Department of Paediatrics and Adolescent Medicine, The Hong Kong Children’s Hospital, Kowloon Bay, Hong Kong
2 Department of Pediatrics, The Third Affiliated Hospital of Sun Yat-sen University, Guangzhou, China
Corresponding author: Dr KL Hon (ehon@hotmail.com)
On 19 July 2019, it was reported that a 20-month-old
boy with restrictive cardiomyopathy due to a
rare genetic disease and multiorgan failure had
undergone successful heart transplant, making him
the youngest-ever such patient in Hong Kong.1 It is
inconceivable why the numbers of donated organs
have declined in recent years, nor why Hong Kong
Chinese parents rarely donate the organs of their
brainstem-dead (BSD) children, despite the potential
lifesaving benefit to other children.2 3 4 5 6 In a local survey
on the knowledge and attitudes towards BSD among
university undergraduates, the respondents’ overall
knowledge of BSD was unsatisfactory.2 Only 24% of
respondents knew that BSD was the equivalent of
legal death in Hong Kong. Among those who agreed
that life support treatment could be withdrawn in
the event that they themselves were diagnosed as
BSD, only 70% and 76% would permit life support to
be withdrawn from a family member or a stranger,
respectively.2 The scenario for a child is unknown but
likely worse. Adequate explanation and counselling
are important to facilitate family members in coping
with this important end-of-life issue.2
Over a 16-year period, 22 patients (17.3%) of
all deaths in a paediatric intensive care unit were
diagnosed with BSD.7 Among them, the authors
recall only four cases of organ donation and included
Western and Japanese families. The belief that
the body of a child must remain integral with no
cutting-out of internal organs is a taboo among local
Chinese parents and may be a major obstacle to
paediatric organ donation. Such cultural beliefs can
take years or even decades to change.
Apart from personal and cultural beliefs,
decisions by family members on organ donation are
affected by multiple factors, including prior exposure
to organ donation information, interaction with the
medical team, and the person who first mentions
the possibility.8 Acceptance of organ donation is
directly related to the end-of-life experience and
grief process9; thus, an experienced organ donation
coordinator should be informed early to provide
open and non-directional counselling and support
to the family to increase their acceptance. Clear
protocols in identification for possible donors and
organ donation processes should also be in place. Regular educational updates should be provided to
doctors and nurses, especially intensivists. Under
the current Hospital Authority guidelines in Hong
Kong, the BSD criteria do not include children aged
<2 years. This definition could be re-evaluated to
increase the numbers of potential donors; guidelines
for diagnosing BSD in children aged <2 years are
available internationally, including in the United
Kingdom, United States, Canada, and Australia.
Some countries have adopted an ‘opt-out’ system
for organ donation, and a cross-country study has
shown that presumed consent countries have a 25%
to 50% higher cadaveric donation rate.10
The above suggestions might increase the
supply of the donor hearts only marginally. The
major challenge in paediatric heart transplant is the
size, as it has to be size-matched, and this makes the
availability even more scarce. The way forward should
be developing alternative replacements. Bioprinting
of a functional artificial heart will be the ultimate
breakthrough in heart transplant; however, there
are still many challenges to overcome. Autologous
induced pluripotent stem cells might offer new
possibilities for building immune-compatible
hearts for patients, bypassing the complications
associated with heart transplant.11 Other options
include developing smaller implantable ventricular
assist devices for the paediatric patients, in order
for patients awaiting transplant to be treated in an
out-patient setting with fewer complications.
The Jarvik 2015 15mm (Jarvik Heart, Inc., New
York [NY], United States) is the only implantable
ventricular assist device designed specifically for
paediatric patients, and it is currently undergoing
clinical trials.
If more donor hearts can be made available,
heart transplants might even become an alternative
to the treatment of complex congenital heart disease,
especially in defects requiring staged operations
with known high morbidity and mortality. Artificial
hearts might be an answer, but it will take another
10 to 20 years before this becomes a realistic option.
Until then, stories of successful paediatric heart
transplant operations can hopefully raise public
awareness and increase the parental acceptance in
organ donation.
Author contributions
All authors contributed to the concept or design, drafting, and
critical revision of the manuscript for important intellectual
content. All authors had full access to the data, contributed to
the article, approved the final version for publication, and take
responsibility for its accuracy and integrity.
Conflicts of interest
As an editor of the journal, KL Hon was not involved in the peer review process. Other authors have no conflicts of
interest to disclose for this manuscript.
Funding/support
This commentary received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
References
1. Toddler suffering from rare genetic disease undergoes
successful heart transplant, making him the youngest ever
such patient in Hong Kong. South China Morning Post.
19 Jul 2019. Available from: https://www.scmp.com/news/hong-kong/health-environment/article/3019350/toddler-suffering-rare-genetic-disease-undergoes. Accessed 20 Jul
2019.
2. Leung KK, Fung CO, Au CC, Chan DM, Leung GK.
Knowledge and attitudes toward brain stem death among
university undergraduates. Transplant Proc 2009;41:1469-72. Crossref
3. Cheung TK, Cheng TC, Wong LY. Willingness for deceased
organ donation under different legislative systems in Hong
Kong: population-based cross-sectional survey. Hong
Kong Med J 2018;24:119-27. Crossref
4. Cheung CY, Pong ML, Au Yeung SF, Chau KF. Factors
affecting the deceased organ donation rate in the Chinese
community: an audit of hospital medical records in Hong
Kong. Hong Kong Med J 2016;22:570-5. Crossref
5. Tafran K. In search of the best organ donation legislative
system for Hong Kong: further research is needed. Hong
Kong Med J 2018;24:318-9. Crossref
6. Hon KL, Poon TC, Wong W, et al. Prolonged non-survival
in PICU: does a do-not-attempt-resuscitation order matter.
BMC Anesthesiol 2013;13:43. Crossref
7. Hon KL, Tse TT, Au CC, et al. Brain death in children: a
retrospective review of patients at a paediatric intensive
care unit. Hong Kong Med J 2020;26:120-6. Crossref
8. Rodrigue JR, Cornell DL, Howard RJ. Pediatric organ
donation: what factors most influence parents’ donation
decisions? Pediatr Crit Care Med 2008;9:180-5. Crossref
9. Hoover SM, Bratton SL, Roach E, Olson LM. Parental
experiences and recommendations in donation after
circulatory determination of death. Pediatr Crit Care Med
2014;15:105-11. Crossref
10. Abadie A, Gay S. The impact of presumed consent
legislation on cadaveric organ donation: a cross-country
study. J Health Econ 2006;25:599-620. Crossref
11. Lundberg MS, Baldwin JT, Buxton DB. Building a
bioartificial heart: Obstacles and opportunities. J Thorac
Cardiovasc Surg 2017;153:748-50. Crossref