What is anencephaly


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Anencephaly is an abnormal development of the brain and skull which occurs during the first weeks of pregnancy. The upper part of the brain and its protective skull cap are missing and the lower part of the brain and the base of the skull are not properly formed.

Sadly, this is always a fatal condition. Whatever anybody does, your baby cannot and will not live.

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What is anencephaly

  1. 1. shinecharity.org.uk info@shinecharity.org.uk 42 Park Road Peterborough PE1 2UQ 01733 555988AnencephalyInformation for parents after diagnosisYour baby has anencephaly. This information sheet isdesigned to help you to understand the condition and toanswer questions you may have.What is Anencephaly? spina bifida is more common. Some infants have spina bifida andAnencephaly is an abnormal anencephaly.development of the brain and skullwhich occurs during the first weeks Is it caused by anything Iof pregnancy. The upper part of the did?brain and its protective skull capare missing and the lower part of No, no one is to blame for yourthe brain and the base of the skull baby having anencephaly.are not properly formed. It occurs in about 1:1000Sadly, this is always a fatal condition. pregnancies. (Bannister C 1992)Whatever anybody does, your babycannot and will not live. The risk of having another affected baby is 1:50 and 1:5 if itWhat causes Anencephaly? has happened more than once. However, taking folic acid for atAnencephaly is due to failure of the least one month before you becomebasic part of the brain to form during pregnant and continuing until youthe first 24 days after conception. are 12 weeks pregnant can reduce the risk of recurrence by 72%. TheMore baby girls are affected than dose you need is 5mg a day, andare boys and the incidence is higher you need to get this on prescriptionin those geographical areas where from your doctor.
  2. 2. AnencephalyInformation for parents after diagnosis Diagnosis Can anything be done to help my baby?As you are now aware, this is byultrasound scan and anencephaly No, anencephaly is totallymay be detected as early as 12 weeks untreatable. The parts of the braininto the pregnancy. that are missing control all the higher functions that we need toWhat happens now? live. These include sight, hearing, intellect, as well as personality andA detailed scan will be done to the ability to feel pain.confirm the diagnosis. After this, mostConsultants will recommend that the Most babies with anencephaly arepregnancy is terminated. stillborn or die in the first days after birth.It is important that you understandthat whenever your baby is born, the Will we be able to have aoutlook is the same, he or she will not funeral?survive. For this reason, it may makethe decision easier if you view the Yes, and most Funeral Directorstermination of this pregnancy as an will be very helpful and sensitive toearly delivery. your needs; many will help arrange a funeral if the infant is born beforeSome parents elect to continue to term 24 weeks gestation (when theto give them and their other children foetus legally becomes a baby).time to say goodbye. Occasionally,parents ask for the pregnancy to Your local Minister or Religiousbe allowed to progress, so that the Leader will also be able to givebaby’s organs may be donated for you advice or you may prefer thetransplant. hospital to make the arrangements.Whatever you decide to do, this will be How about futurethe hardest decision you will have to pregnancies?make and you need to discuss all youroptions fully with your Consultant. Give yourself time to mourn for this
  3. 3. baby and to recover from the trauma Some hospitals have a Book ofof his/her birth and death. Then, start Remembrance which you might liketaking 5mg of folic acid at least a to contribute to. Shine also has amonth before you want to be pregnant Book of Remembrance.again. Your Shine Support andIf you are a smoker, try to give up now, Development Worker or Shineas smoking can inhibit the efficiency of Specialist Adviser is at the end offolic acid. If you are on anti-epileptic the telephone if you need to talk.drugs, speak to your neurologist aboutthe effects folic acid may have on your Some hospital trusts havemedication. Once your pregnancy has bereavement counsellors or, youbeen confirmed, ask your doctor to may wish to contact:refer you for an early scan; if negativeyou will be re-scanned regularly up to ARC the 20th week of the pregnancy. (Antenatal Results and Choices) 73 Charlotte Street, Is there anything else I should London W1P 1LBknow? Helpline: Losing a baby, for whatever reason, is 0845 077 2290, always a devastating experience. You Mon-Fri 10am-5.30pm must expect birthdays, special family Email: info@arc-uk.org, days and celebrations to be difficult for Website: www.arc-uk.orgyou for the first years. Care ConfidentialYour other children will naturally wantto talk about the baby and this too will Care Confidential online offersbe difficult. confidential, unbiased pregnancy and termination counselling.Perhaps it will help you all to encouragethem to write a letter or draw a card or Tel: 0800 028 2228 picture for the baby and these could Website: www.careconfidential.combe kept in a box of memories.
  4. 4. Forget-me-not and we’ll send you regular updates with news about your fund.Memorial Fund To find out more call Jane Bishop at Shine on 01733 421330 orAt Shine we receive many email jane.bishop@shinecharity.donations in memory of a loved org.ukone who has passed away.Friends and family often find it afitting way to remember someonespecial.Now, when we receive a gift insomeone’s memory, we can set upa Forget-me-not Memorial Fund intheir honour.It really is so simple to set up asShine handle all the administrationHelp usShine relies on people’s generosity and support so we can help our clientswho depend on us for help and advice - people with hydrocephalus,spina bifida, their families and carers. To donate to Shine please visitwww.shinecharity.org.uk or call 01733 421329.This information has been produced by Shine’s medical advisers andapproved by Shine’s Medical Advisory Committee of senior medicalprofessionals.Shine - Registered charity no.249338To see our full range of information sheets and to find out how to donateto Shine please visit www.shinecharity.org.uk