BBC News. Newborn baby Teddy was UK's youngest ever organ donor. 2015. (accessed 15 March 2016)

Chundrupatla M, Swargam N Anencephaly – A Case Report. International Journal of Scientific Study. 2014; 2:(7)255-7

, 3rd edn. In: Coady AM, Bower S London: Churchill Livingstone; 2015

, 3rd edn. In: Collins S, Arulkumaran S, Hayes K, Jackson S, Impey L Oxford: Oxford University Press; 2013

Johnson SP, Sebire NJ, Snijders RJ, Tunkel S, Nicolaides KH Ultrasound screening for anencephaly at 10-14 weeks of gestation. Ultrasound Obstet Gynecol. 1997; 9:(1)14-6

Khoshnood B, Loane M, de Walle H, Arriola L, Addor MC, Barisic I, Beres J, Bianchi F, Dias C, Draper E, Garne E, Gatt M, Haeusler M, Klungsoyr K, Latos-Bielenska A, Lynch C, McDonnell B, Nelen V, Neville AJ, O'Mahony MT, Queisser-Luft A, Rankin J, Rissmann A, Ritvanen A, Rounding C, Sipek A, Tucker D, Verellen-Dumoulin C, Wellesley D, Dolk H Long term trends in prevalence of neural tube defects in Europe: population based study. BMJ. 2015; 351

National Institute of Neurological Disorders and Stroke. NINDS Anencephaly Information Page. 2015. (accessed 9 March 2016)

Nelson-Piercy C, 5th edn. Boca Raton, FL: CRC Press; 2015

, 2nd edn. In: Rodeck C, Whittle M London: Churchill Livingstone; 2009

Rowan-Hull A Human organogenesis. In: Coward K, Wells D Cambridge: Cambridge University Press; 2013

Sadler TW, 12th edn. Philadelphia, PA: Lippincott Williams and Wilkins; 2012

Stumpf DA, Cranford RE, Elias S The Infant with Anencephaly. N Engl J Med. 1990; 322:669-74

, 2nd edn. In: Tasker R, McClure R, Acerini C Oxford: Oxford University Press; 2013

Usang UE, Olasode BJ, Archibong AE, Udo JJ, Eduwem DA Dicephalus parapagus conjoined twins discordant for anencephaly: a case report. J Med Case Rep. 2010; 4:(38)

Successful tissue donation in the anencephalic baby

02 April 2016
6 min read
Volume 24 · Issue 4


Anencephaly is a rare phenomenon, occurring in 4.7/10 000 births, which results from failure of primary neural tube closure during fetal development (Collins et al, 2013). It is a lethal condition comprising absence of skull bones, forebrain and upper brainstem. The cranial neural tissue is exposed (Tasker et al, 2013). The aetiology of this condition is unknown (Stumpf et al, 1990). Many congenital defects are now diagnosed by antenatal diagnosis as early as 11 weeks' gestation (Sadler, 2012). A severe lesion, such as that found in the two cases reported in this article, is incompatible with life. This article reports on two consecutive cases of anencephaly at the same hospital, in which both sets of parents independently wished to continue their pregnancies till term in order to provide tissue donation, primarily heart valves. The donation of other organs may be considered in cases of anencephaly, although this is not always possible.

Anencephaly is a defect in the closure of the neural tube during the fourth week of gestation, occurring in 4.7/10 000 births (Collins et al, 2013). The neural tube is a narrow channel that folds and closes between 24–26 days post-fertilisation to form the brain and spinal cord of the embryo (Coady and Bower, 2015). Anencephaly occurs when the cephalic or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull and scalp. Infants with this disorder are born without a forebrain and cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed, not covered by bone or skin (Stumpf et al, 1990; Tasker et al, 2013). A baby born with anencephaly is unconscious and will usually demise shortly after birth. Although some individuals with anencephaly may be born with rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions, such as breathing and response to sound or touch, may occur (Rodeck and Whittle, 2009).

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