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An opinion article from Science Magazine:

Anencephalic Organ Donation: A promising endeavor

Background on Anencephaly


Anencephaly is a neural tube defect that occurs when the neural tube
does not fully close in the early stages of fetal development in the womb.
This allows amniotic fluid to flood the cranial cavity and causes necrosis of
any early formation of cranial tissue; while the rest of the body and organs
develop unharmed. Infants born with anencephaly lack many of the
recognizable brain lobes, pieces of the skull, and skin the covering it. They
can be carried safely to term and birthed vaginally with a heartbeat and
moderate lung function. Anencephaly affects 1 in every 1,000 pregnancies;
there is no cure, and most infants who are carried to term do not survive
more than a few hours (Anencephaly).

A Shortage of Organs
It is a known fact that there is a large and growing deficit for organs in
the United States and globally. This shortage is especially evident in pediatric
and infantile patients due to the lack of potential donors available at this
age. Yet, there are many additional potential donors in infants with
anencephaly that are not being considered for transplantation because of
legal obligations. Thus, in order to minimize this increasing deficit, use the
age-appropriate donor pool efficiently, and save the lives of hundreds of
children each day, organ donation from infants with anencephaly should be
legal, and accepted as a common medical practice.
Orga Kidn Live Pancre Pancre Hear
t / Intesti
t Lung Lung
All Ages

134,69 109,61 15,82








< 1 Year




1-5 Years







Source : US Dept. of Health and Human Services Based on Organ Procurement &
Transplantation Network data as of April 3, 2015

It is imperative that the standards in this situation be changed. Right

now, there are 802 children under the age of five years old on the UNOS
transplant waiting list (above figure) and unfortunately, only about 8% of
children who die in NICU are suitable organ donors, and most are donors
after cardiac death which means that they cannot donate heart, or lungs,
and organs such as kidneys and liver have a greater risk of dying before

transplantation (Neonatal Recovery). This means that most of the 254

infants awaiting hearts will die in the process, and some of the 238 awaiting
a kidney, and some of the 264 awaiting a liver will most likely die also (above
figure). About 1,000 to 2,000 live anencephalic births occur each year in the
United States (Kohrman); and, anencephalic donors retain cardiac function
until donation so donor organs have a higher survival rate, and the heart and
lungs are viable for transplantation (Gilman). The introduction of
anencephalic children as organ donors could significantly aide in eradicating
the extreme shortage of neonatal organs.

Benefits Beyond Transplantation

However, the scope of this simple change goes much further than
pediatrics. There are major research benefits of live neonate organs. In
general, neonatal organs are still in the early stages of growth after birth so
they are good tools for researchers to use to understand how specific organs
grow and develop. In addition, because these organs are not fully developed,
they often lack genetic markers and have lower rejection rates than adult
organs, which helps researchers create better anti-rejection medication for

organ transplant patients. Each organ available for donation also has specific
research benefits:
Neonatal hearts allow researchers to better understand the markers for
certain cardiac diseases and discovering how to better prevent and treat
them (Neonatal Recovery).
Lung donations from infants teach researchers about normal lung
development and how to prevent lung disease in premature infants. Children
born from 26 weeks to 34 weeks, will often have under-developed lungs, and
neonatal lung donations help to refine the treatment of premature babies to
ensure that their lungs develop fully and properly (Neonatal Recovery).
Neonatal pancreas donations are often used to research origins of type
one diabetes and refine the process of pancreas transplants to eventually
cure type one diabetes (Neonatal Recovery).
Young livers help researchers understand how liver cells grow, which
can aide in further developing safer techniques for liver transplantation. For
example, 2014 study used a liver from an anencephalic child to determine
that hepatocyte liver cell transplantation is a much safer option than
traditional orthotopic liver transplants.
The study implanted cells from the anencephalic infants healthy liver
into a diseased liver, and as the healthy cells grew, they overtook the
diseased ones to form a fully functioning liver. This new method is less
invasive and has a much lower rejection potential than the traditional

method of removing the diseased liver and implanting a sliver of healthy

liver cells to grow (Godfrey).
Hepatocyte Transplant


Legal Complications
As of now, the legality of anencephalic organ donation is up for
interpretation; but, the precedent has created a barrier. Parents often turn to
organ donation as a way for their childs life to mean something, and to gain
some comfort that the pregnancy was not for naught. Additionally, since
most anencephalic infants still have an intact brain stem at birth, this allows
cardiovascular functions to continue, making these children prime
candidates for organ donation. However, it is also because of the working
brain stem, that many people claim organ donation is not an option. The
Dead Donor Rule (DDR) coined by Justice John Roberts, clearly states that
vital organ donation cannot be accepted from living donors. The Uniform

Determination of Death Act (UDDA) is what is most often used in conjunction

with the DDR to declare death before organ donation. The UDDA was formed
in the early 1980s and states that death can occur from the irreversible
cessation of circulatory and respiratory functions (cardiac death), or the
irreversible cessation of all functions of the entire brain, including the brain
stem, (Sade). In other words, in order for the doctor to declare death a
necessary condition for organ donation under the DDR - the patient must
have suffered cardiac death or brain death. Although, since brain death is
considered slightly ambiguous, the law then further defines brain death
using what is known as the Harvard Criteria. These are: lack of response to
stimuli, no movement or breathing, no reflexes, and a flat EEG or zero brain
waves (Gilman). From a legal standpoint, it is clear how one can write off
anencephalic infants as potential organ donors (functioning brain stem, and
visible breathing). However, most of the law is not applicable since children
with anencephaly do not have any brain functions to begin with (they cannot
cease if they did not commence), and because of their lack of brain lobes,
and EEG cannot even be performed. This lack of definition in the law leaves
cases like these largely up to precedent and individual doctor discretion.
Consequently, often times, the option of organ donation is not even
presented to the parents of anencephalic infants.
A Cohesive Solution
Many have suggested removing the Dead Donor Rule completely as a
viable solution to the legal roadblocks of anencephalic organ donation.

However, this would create many separate ethical issues dealing with
permanent vegetative state (PVS) patients, and patients with degenerative
diseases such as Alzheimers and Dementia. The other major suggestion
currently available is to redefine personhood to include the ability to have
conscious thought. The US Constitution gives the right to life to all people
and by redefining personhood, one could theoretically get around the
constitutional right to life. This is popular because it follows along the lines of
Rene Descartes philosophy I think therefore I am, But again, this is tricky
to do since anencephaly has many similar symptoms to patients with PVS
and degenerative diseases when it comes to conscious thought (Gilman).
But, what makes anencephaly different from PVS and degenerative diseases
is that it only occurs in infants, who have parental guardians. While current
law prohibits anyone, including legal guardians to consent to organ donation
before cardiopulmonary death or brain death, it would be easy for lawmakers to allow guardians this right. The other big difference is the absence
of brain lobes in anencephalic patients. A clause could be added to the DDR
stating that in the absence of recognizable brain lobes to perform an EEG
with, the patient can be considered brain dead.
There are a lot of legal options for allowing anencephalic organ
donation, but perhaps the simplest option is to just modify current standards.
The DDR and the Harvard Criteria both include a clause at the end stating in
accordance with accepted medical standards (Sade). In other words, if more
doctors began performing transplant surgeries on anencephalic infants, it

would become more standard amongst the medical community, and

therefore legal.
Anencephaly is a tragic birth defect; but it can be turned into
something positive. Allowing anencephalic organ donation has the potential
to eliminate the massive shortage of neonatal organs and provide essential
vessels for research that could save many lives in the near future. A few
small modifications to laws and standards, can provide very large
modifications to lives; and that, would make an impact worth writing about.

Works Cited

"Anencephaly." Genetics Home Reference. US National Library of Medicine, 06 Apr. 2015. Web. 13
Apr. 2015.

Gilman, Samantha J., JD. "The Use of Anencephalic Infants as an Organ Source: An Ongoing
Question." Elon Law Review 4.71 (2012): 71-92. Web. 12 Apr. 2015.
Godfrey, Kathleen, and Mary Z. Kish. "Neonatal Liver Cell Donation: A Case Report." Neonatal
Network 33.6 (2014): 315-21. IngentaConnect. Web. 12 Apr. 2015.
Kohrman, Arthur F., MD, Ellen W. Clayton, JD, MD, Michael A. Grodin, MD, Ian H. Porter, MD, and
Virginia M. Wagner, MD. "Infants with Anencephaly as Organ Sources: Ethical
Considerations." Pediatrics 99.6 (1992): 1116-119. The American Academy of Pediatrics. Web.
12 Apr. 2015.
"Neonatal Recovery Frequently Asked Questions." Neonatal Recovery Frequently Asked
Questions. International Institute for the Advancement of Medicine, 2015. Web. 13 Apr. 2015.
Sade, Robert M., MD. "Brain Death, Cardiac Death, and The Dead Donor Rule." Journal of the South
Carolina Medical Association 107.4 (2011): 146-49. US National Library of Medicine. Web. 12
Apr. 2015.