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Unconscious Life: The Occurrence and Complications of Anencephaly

Cristiane de Oliveira's picture

If an organism is able to breathe, circulate blood, and exhibit basic physical functions, we assume it is alive. What if this same organism is without a critical part of its brain, and thusly is deaf, blind, and wholly unconscious– is this organism still alive?  How are we able to define what makes us human, or better yet, what makes us whole? Within an animal or plant life, we might consider these characteristics to be unremarkable, but within a human it is an atrocity. There are babies whose entire conception, gestation, and lives are lived out in a black hole of unconsciousness, brought on by the congenital disorder anencephaly. This disease raises more questions than it does answers; above all, it brings heartbreak to those affected by its occurrence.

            In the normal trajectory of fetal development, the fetus’ neural tube should close on its 30th day after fertilization. The neural tube is a channel which eventually closes in order to develop the central nervous system, which is the brain and spinal cord. In some cases, however, the neural tube may not properly close due to some impediment or other, and the fetus will suffer damage or abnormal development of its forming nervous system. In some cases, this damage can result in the fetus having anencephaly.

Anencephaly is a somewhat common congenital disorder in which, during the 21st to 28th day after fertilization, the neural tube of the fetus does not close; therefore, the fetus is missing its prosencephalon (also called the forebrain), and large parts of its skull and scalp. The prosencephalon, which includes the diencephalon and the telencephalon, is responsible for the development and use of speech and language, motor functions, olfactory senses, memory, emotion, certain metabolic processes, and autonomic activities. The areas of the brain which are formed in an anencephalic fetus are left exposed, without any skin or bone to cover it; they are usually detrimentally affected by the amniotic fluid that surrounds the fetus.

            Fetuses afflicted with anencephaly, if carried to term, are born blind, deaf, unable to feel pain or certain physical stimuli, and are not conscious. They are, however, able to exhibit reflex and autonomic functions because their brainstem has not been affected, and thus are able to breathe, and depending on the situation, able to react to certain stimuli. Anencephaly may also affect the baby’s physical appearance: there is an obvious and large fissure in the back of the child’s head, sometimes extending to the forehead, where their tissue and brain are exposed; they may have overly protruding eyes; extremely disfigured head and face; and other malformed facial features. These children’s bodies are otherwise perfectly formed and healthy. Unfortunately, these babies will never be cognizant or able to think or talk, for they are totally unconscious their whole lives.

There is no known cause for anencephaly, but it is speculated that it happens because of a combination of genetic and environmental factors. It occurs indiscriminately in all races, but varies from area to area. Anencephaly occurs in 1 out of 10,000 births in European countries and the US, and 10 out of 10,000 births in Latin America and China (2, 3). Current studies show that there is a higher rate for anencephaly within women who take insulin for diabetes, as well as those who take certain epilepsy medicines. It is recommended for pregnant women in general to take folic acid throughout their gestation, and this may be a link in preventing anencephaly. Women who have anencephalic pregnancies are unlikely to have another child who suffers from the disease, and if they routinely take folic acid, the risk of another anencephalic pregnancy goes down to 1% (1, 2).

Anencephaly can be observed within a routine sonogram, since the absence of the fetus’ head is apparent; at this point in time, parents are given the option of aborting the fetus, or carrying it to term. Those who choose to carry the fetus to term are aware that their child may very likely die during gestation; if they survive birth, they will undoubtedly die within minutes, and at most, a few days. Women who choose to give birth to anencephalic babies usually undergo a C-section, increasing the likelihood of a live birth; however, in over 55% of these cases the child is stillborn (1, 2). Curiously enough, there have been documented cases of anencephaly in twin births: while one twin may be healthy, the other may suffer from anencephaly. In such cases, women may choose to undergo a partial abortion, which carries some risk to the healthy twin. Other women choose to complete their term and deliver both babies with few complications.

The physical stress of carrying an anencephalic child is significant on the mother; besides experiencing great emotional distress, some women suffer polyhydramnios. Polyhydramnios is a condition in which an excessive amount of amniotic fluid leaks into the amniotic sac, causing a woman’s abdomen to exceedingly swell up. This is a somewhat painful condition, and can lead to the umbilical cord slipping in front of the baby, the placenta to prematurely separate from the wall of the uterus, and the fetus’ death.

            If an anencephalic child survives birth, doctors will not attempt to “save” the baby from its impending fate. No attempts are made to incubate, resuscitate, or repair the child’s anencephaly; rather, most doctors merely offer hydration and limited nutrition in order to make its short life comfortable. The parents will most likely request they be left alone with their child for the duration of its life, with little medical intervention. In most cases, anencephalic babies eventually stop breathing as their organs and brain fail, and peacefully expire with no pain (5).

            Women with anencephalic pregnancies must make a difficult decision when they learn of their condition. They must consider their choice to abort or carry to term their fetus, and although between 90-98% of women who learn they are carrying an anencephalic child will abort, there is a small percent of them who choose to continue with their pregnancy. In most reported cases, these women hold strong religious convictions and thusly are morally against abortion, wholly against holding a person’s life on their hands, and preferring “God do his will”. It is a deeply personal choice these women must face in such circumstances, but it should be noted that carrying a child whose survival chance is zero places women in a detrimental psychological and emotional state (4, 5). 

Equally as important, anencephaly raises the question of what classifies as existence and life. There is a surging debate as to whether or not these babies are truly alive, and whether they should even be birthed. By medical standards, these babies are physically alive but mentally dead; there is little comfort or medicine they can administer to these babies and their families. Should the parents of anencephalic children bring these children into the world, when all they will experience is nothing – no pain, but also no love? Is it not more traumatizing for these parents to have to see their malformed child – a little being who holds big dreams and expectations in his hands – be born, and minutes later die in their arms? With prenatal testing and sonograms, our society has been able to explore the once unimaginable, and various diseases and disorders can be caught before a child is born. So many things can go wrong in the process of reproduction it is a miracle there exists six billion living humans on our planet. There has been an upward trend of parents choosing to abort those pregnancies, including those who have Down’s Syndrome, a severe but not as hopeless disorder as anencephaly. Who are we to be able to choose if a human being lives or dies, whether we should be allowed to extend their pain for a few minutes of somewhat selfish joy? Stemming from that argument, what makes an anencephalic baby a human being?  His body is formed like a perfect human being’s, but he is not emotionally or mentally “alive”; he can breathe and eat and even cry, but he cannot think or speak or know. In biological terms, an anencephalic child is a living organism, but not a live human being. Anencephaly research currently offers no cure for its occurrence, and it is a heartbreaking ordeal for all of those involved. Irregardless, anencephalic babies are beings who have been engendered, wanted, loved, and to many, truly live in spirit or soul.




1. "Anencephaly." Gale Encyclopedia of Neurological Disorders. The Gale Group, Inc, 2005. 18 Nov. 2006.


2. “Anencephaly.” National Institute of Neurological Disorders and Stroke, 2006.  19 Nov. 2006.


3. “LA Times, 2006. 19 Nov. 2006.,0,4777090,full.story?coll=la-homepage-calendar-widget


4. Links about Anencephaly. Anencephaly Net, 2006. 19 Nov. 2006.


5. Personal stories and information on Anencephaly. Anencephaly Information, 2005.  19 Nov. 2006.


Serendip Visitor's picture

Hi I was going for an all

Hi I was going for an all natural, no hospital, no doctors pregnancy And birth. I had a Shaman and mid wife coach me through till about the last month of my pregnancy. My father caught wind of what I was doing. He thought I had been receiving prenatal care. (Which I had but not traditionally) When he found out I've only to been to an actual doctor one time since my pregnancy, he drove 8 hours and insisted I go home with him and see a doctor before giving birth.
I'm so glad I decided to go home with my father. My doctor's appt and ultra sound had an outcome.that no one was expecting. anencephaly. My father was heart broken. But deep down I knew something was a midst. I was told the baby would be incompatible with Life. I was relieved. I don't and will not raise a child with a major birth defect. I have strong scientific beliefs and a child who would not have a normal life and have to have round the clock care literally serves no purpose. It's been 5 days since this diagnosis and the doctor still hasnt called me for my referral appt to a hospital in a larger town equipped to handle such things. My due date was today and the longer this child stays in me the more emotional damage it's doing.

It's like yeah my due date is today. I'm suppose to have a healthy baby laid up in some nursery (or my Shaman's home) instead I have this baby that's literally stuck inside of me, who kicks the hell out of me because it's full term and wants out but the back of his head is missing and he's not going to live very long after birth. That's one of the most mind bending emotions a woman could have. Like I'm carrying around a dud. For many woman this would be emotionally and mentally devastating to say the least. I'm so grateful I have the kind of mentality I do and one of a kind way of looking at things. Cause this would surely fuck me up for years to come!

Serendip Visitor's picture

No Choice

In the state of Texas you must carry the baby to full term or go to a state that allows abortions. It is hard to believe an exception it’s not granted for medical conditions such as this. I’m not saying an abortion is the right choice even though many doctors recommend it. 3 out of 4 doctors in Houston told my friend to go to Louisiana and get an abortion. Only one doctor showed compassion. My friend said it’s in God’s hands and that she was not going to make that decision. I admire her strength and faith in God. She’s an amazing person going through a tragic time. I never submit comments on blogs. I felt I had to on this due to the many harsh words about the babies with this condition and the women that carry them full term. I don’t know how you sleep at night. Your feelings could be expressed in a much kinder way.

Just a guy's picture

Something to remember

We all must remember that this condition is not black or white - its a spectrum. There can be a child that is classified as anencephalous, but still has some normally functioning parts of their brain. There can also be other children, with no functioning parts of their brain and only a brain stem, that are technically living but "living" in the same way that a cell is. They metabolize and do nothing else.

Lolo's picture

Every life comes from God

I am 26 years old and i got married November 2015, in the same year December, I got pregnant, i started my antenatal at 4 months and i chose not to go for scanning. This being our first pregnancy (me and my husband),
we were so happy but we did not have much information about pregnancy, and we didn't bother. However, when i was in the 24th week of my pregnancy, i started to feel as if i have a wound inside, i was really in pains. I decided to go to hospital, because i was not so sure of what was happening to me, when i got to the hospital, i was only given pain killer, no diagnosis was done on me and was told to go back home. The night of that day i had no sleep and in the next morning i opted to go to hospital again and there i was told its premature labour (6 months), so i was given a bed and immediately blood started coming out, my baby made its way out (on the night of 31st July) and i was so sad when i was told by the doctor to have a closer look at my baby, only to see that he had anencephaly( its brain protruded at the back of its head with no cover like skin or skull). I WONDERED how such a baby would come out strong and crying loudly. The doctor said his condition could not be treated. I was all ears, thinking my baby is going to die and there is nothing me or anyone else can do to save his life, it broke my heart.Then the doctor took him to the nursery room for oxygen, and i could only go there to nurse him, my husband came the next morning and i took him to the nursery room to see our baby and he was so confused did not utter a word, and i could tell he is so heart broken. I and my baby stayed there for 3 days and on the night of 3rd August, Doctors called me for cancelling, there, i was told that my baby's condition is critical and that no operation could be done on him and that his survival rate is too slim, and they advised me to take him home, i broke into tears. Immediately i called my mum and told her everything the doctors said and she said its oky. Then on the 4th of August, they came to take us home (me and the baby). Before leaving the hospital, we were cancelled and i was given folic acid to take for 30 days, then we left, Just 10 minutes in our home, i noticed that my baby is no more. May his Soul rest well

Question Now
I am now pregnant again( 2 months old), am anxious about my baby's health, should i go for scanning, will they be able to detect any birth defects (at 2 months)?, Will the folic acid i took immediately i got out of the hospital, be effective on my pregnancy? Help me with answers

Mary's picture


The folic acid has been shown to help. I gave birth to an anencephalic stillbirth in 2000. In 2003 I had a healthy baby boy. Good luck.

Serendip Visitor Granny's picture

great grandchild annencephalic

My step great grandson with anencephaly was buried yesterday with a traditional sweet burial service. He lived 75 minutes. He was beautiful. I am very proud of his parents and his large extended family who supported the parents in their decision to carry the baby. Little Jude had a great positive impact on many lives. He and his parents witnessed to the awesome love of God in their lives with their tremendous faith. As his mother said "we prayed for a miracle; we didn't get the miracle we wanted but there have been many miracles around this journey already". These events don't just affect the lives of a small family unit. Their effects go far and wide to influence the lives of many. These babies are not trash to be discarded - they are gifts from God who call forth the best in us as we care for his precious little ones. Little Jude now rests in the arms of his heavenly father who is love itself. Jude, we'll never forget you.

Serendip Visitor's picture

Abortion is the answer

SORRY but I have to be brutally honest. These are no way anywhere close to looking like a cute normal baby.Abortion is the answer. They are a burden. Really I mean all they can do is eat , sleep and crap. If it should live its basically brain dead I'd never give birth to something looking like a mutated frog.

Serendip Visitor's picture

Abortion may be the right

Abortion may be the right choice for you. However to demonize another family and to say their child is not precious or "cute" is very insensitive and cruel. Your words are harsh and disrespectful. Every life matters no matter how small or short lived. To say these things to a family who has the hard decision to face and deal with the loss of a child is beyond me. I hope if you ever face this, you will be treated with kindness and not the way you have decided to voice your thought.

Serendip VisitorDeb's picture


i was blessed to have 1 very healthy whole little girl. I am & have always been thankful. I have a sister who died before I was born. She was born with a severe form of Spina bifida which was further complicated by hydrocephalus. Had she been born in this day, she would probably have lived because doctors would have put a shunt in her skull to drain the spinal fluid from her brain, but she would have been severely mentally delayed probably, & most definitely paralyzed from the waste down.
My only daughter has given me 3 lovely grandchildren. The eldest is mentally delayed with a form of autism complicated with a diagnosis of oppositional defiant disorder. Raising their other 2 children is challenging because of the aggression. &!stress which is part of trying to know how to best parent the eldest boy. Do I love all my grandchildren. You bet I do! Do I wish my eldest sister lived so I could have met her & loved her? You bet I do!
I am 62 years old now & to this day, my.Mother talks & cries occasionally for my sister.
My point is...don't say harsh things like you'd never give birth to something that looks like a mutated frog or whatever it is you said. That is very cruel, harsh, judgemental & uncalled for.
To abort or not abort is a very difficult choice I'm certain for any Mother to make. It is of a highly personal nature & unless you yourself have experienced being pregnant & being told that your baby is missing a large portion of it's brain & that the condition the baby has is not compatible with life, you DO NOT know the burden & heartache these parents feel. These parents all make the choices they do for personal reasons - that's their right. It's THEIR heartache - you DON'T know it nor can you. You CAN'T share it, so respect their right to choose how to find their peace & comfort however they choose. Coping with grief takes many forms. Just because they choose to carry a baby with anencephaly to term knowing their baby will die, that choice may be what helps them to move through the grieving process. Be kind. Be gentle. Walk lightly through this life.

Serendip Visitor's picture


The author misspelled Down Syndrome. It's not Down's Syndrome. Also taking to term my baby with Anencepahaly made me a less judgmental and more compassionate person. Respect other people's morals and values - they may not be the same as yours. Namaste.

Cameron's picture


It is ABSOLUTELY Down's Syndrome!

Serendip Visitor's picture

harshness I see

I carried my Angel Leah Cait as long as possible. Not only because because it is what we felt that was the right thing to do. But because at the same time I was carrying her twin sister perfectly healthy. Leah survived 20 minutes. Was never in pain. She was just tired. But in order to give birth to her sister we had to keep Leah as long as possible. Because if she had passed early we ran the risk of loosing both.

Serendip Visitor's picture


I am 38 weeks pregnant and waiting to deliver my baby who has anencephaly.
I recieved the diagnosis at 21 weeks.
I chose to go full term and not terminate- the best decision of my life.
I am nervous and sad during my last days with my baby...God give me the strength to get through wat wil be the most difficult time in my life.xx

Blondie's picture

Anencephalic baby

I don't think either side is right in this debate. The outcome is the same. It's death! Some cannot handle watching their child gasp for air and seize then finally die and some can. Some feel to birth these babies is selfish and cruel since they will only suffer, but the other side says it's cruel to not birth them. I don't believe that one Mother is more "christian" than the other. Those who terminate love their baby just like those who birth! Women who induce early are no better than those who terminate, but they will act like they are. Why not be supportive of each other when it comes to this horrible defect instead of trying to show how "right" you are! This goes to both sides of this debate. This is painful for any Mother no matter what she chooses and it in no way diminishes her Christianity.

A Mother gave birth last month to a little girl who had Anencephaly. The baby was considered stillborn. That Mother just killed herself last week. Keep this in mind before judging people. Some women cannot handle watching their child die! This suicide ruined a little boys life who was only 5. He didn't deserve to lose his Mom. This baby girl stood no chance at living life, but her Mother did. It would be nice to see women be more compassionate towards each other instead of saying how right their choice was! Both choices are hard, but every woman will choose what is best for herself, her family and make the choice that she can live with.

Serendip Visitor's picture


The mother may have commited suicide after an abortion as well its better to give birth
Whether naby will live or not
Depression is real
Suicide is real sad but real

Serendip Visitor's picture

their death

The baby has autonomic responses, so keeps' breathing. The trauma of birth is the hard thing, unless ceasarian. these children- if they live- ar affected by LOVE! They smile, and coo! They can hear! They definitly still have their SOUL!

Amanda_M87's picture

I couldn't agree more. If a

I couldn't agree more. If a woman does decide to carry an anencephalic fetus to term, that's her choice. Telling other women what to do however is abhorring.

Serendip Visitor's picture

Never would I give birth to

Never would I give birth to one of these highly deformed babies. Why go through the pain and anguish, to have such a
hugely deformed child, that's only going to live for hours?
They are NOT the same as a healthy and perfectly formed baby. They should be aborted as soon as the malformation is
They cannot be helped. They are a burden, and should be aborted as soon as possible. I agree with the one commentor,
who did abort hers. She made the most sensible decision available.

Serendip Visitor's picture

Look beyond the here and now

I am a mother of a little girl who just recently found out that she has anencephaly. I have decided to carry he as long as I can. You are right she will be physically very deformed. As unfortunate as it is.. because of sin being in the world she suffers from something that she knows nothing of. Something she can not prevent. Something she can not change. I have a son he is two years old and there is not one thing I would not do for him. In the case of my little girl all I can do is grant her the moments she has. You are right when you say that it is pain and anguish. This is a trial me and my husband never expected to face. But you see. My God made a promise to me. He said He would put the babes back in the arms of the mothers. That this world is temporary. That love is the greatest of all things.Romans 5:3-4 Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. You may not understand why some have the convictions they have. However I would encourage you to see the courage and love these women have for their children. The hope. Of seeing the forest instead of the trees. That God will resurrect them. And these children will not have deformities in his perfect world. Glory to the God who will reverse all of sin, all satan, has done and death itself.

Serendip Visitor's picture


I totally agree with everything you said. I believe these little souls will be healed in Heaven. That's exactly why I would send a child of mine home to Heaven as soon as possible after such a horrid diagnosis. There is no right or wrong decision here. These babies don't feel or think or experience anything. What you see them do is relfexes..involuntary actions in response to the misfirings of a dying brainstem. There is no possibility of conciensness without a forebrain. So each to their what helps you get through this awful situation. No judgements here.

Serendip Visitor's picture


I hope you have an easy pregnancy with no complications :( I'm sorry your baby has this deformity, but in heaven, they will be whole, and beautiful, and very much alive. I'm sorry, I was crying because of your comment so I had to reply...

Serendip Visitor's picture

ur disgusting

how can u judge wen u have never been in that situation!!
i have i had a little boy with anencephaly and he was beautiful its ppl like u that are so judge mental evem tho uv never been in that situation thy are still human beings so who are u to say ur a horrible human being n u shud be ashamed of urself how ur parents must be so proud of a small minded person such as urself!

Deb Ryan's picture

Wow are you serious? My

Wow are you serious? My grandson had anencephephlia and was delivered at6 1/2 months and lived for about an hour. I will always cherish the time I had with him. He was beautiful not ugly as you stated these babies are. And no matter how short his time was on this eatrh he deserved all the love and comfort we could give him. I certainly hope you never have to go through losing a child because you have no compassion. Just because they are different they don't deserve to be loved hmmmmmm I have nothing else to say to someone like you.

Anencephaly mother's picture


Everyone is this situation is entitled to their own opinion but you don't need to voice yours in such a harsh way. I am pregnant with my son who I am proud to carry to term!! I made the right choice for me and my family and people like you who aren't in that situation have no right to judge. There are cases of these babies being years old, or even doctors being incorrect in the diagnoses. I would never tell someone they have to abort, that should be completely up to them. I hope you learn to recognize that everyone is entitled to their own opinion, but you should not judge a different one then yours. Especially when you aren't living in that situation.

Another Anen Mother's picture


I too am pregnant with an anencephalic little girl and have chosen to carry to term. For my family, carrying to term was absolutely the right decision.

I question not only the author's assertion that carrying to term will have severe psychological and emotional consequences for the mother...choosing to abort also carries significant psychological and emotional consequences but also the first commenter's harsh judgement. No matter what option you choose, neither is right or wrong...both options suck because, in the end, we are still losing a child. A child that was planned, loved, and very much wanted.

To stand in judgement of mothers who have had to make this decision, regardless of whether or not you have been there, is wrong and hurtful. Each decision has consequences and no matter what you choose, the loss of a child will be a part of your life forever.

louise's picture

my child with anencephaly

I am currently 33 weeks pregnant with a child with Anencephaly (a little girl) and found out when I was 13 weeks at my scan that she had this condition. My options were termination or continue the pregnancy. It's the hardest decision any parent should ever have to make. I had 3 terminations booked but knew I would end up regretting it if I aborted. I am very happy with my decision to continue this pregnancy and don't regret it one bit. I am both excited and heartbroken. Excited for the fact of meeting this little girl who has been very active inside me over the last months and heartbroken because of losing her. There is no right and wrong answer to what you do.

Tim L.'s picture


That was a very powerful comment, thank you for sharing that very difficult story with us. I hope your future children turn out as well as you did.

Serendip Visitor's picture


"Irregardless" is not a word in the English language.

claire's picture


i have also had a anencephaly baby.. last oct i decided to have a abortion. i was 12 weeks and 5 days. it broke my heart to do that but i thought it was for the best for me and my family. i have 3 other children and didnt want them to go throught the pain which i was doing.. i wasnt strong enough to carry full term but i dont regret my decision people should never judge or comment if thay have never walked in the shoes i have . it was our ignorance for beliving that all pregnancies lead to healthy babies.. i will never forget my baby and everyday it hurts .. its so important to take folic acid ... i am naw pregnant again my baby is due on the 6th oct all is going well it will never replace but it has heeled some pain x

Serendip Visitor's picture

Detrimental Psychological and Emotional State

Like so many others who have commented, I too have a personal experience with anencephaly and feel compelled to leave my mark here.

The comment that "carrying a child" whose survival chance is zero places a woman in a "detrimental psychological and emotional state" could easily be construed to imply that the woman has placed herself in this difficult situation, although I realize that the author has repeatedly attempted to make clear that this difficult decision should not be approached with judgement. I am currently carrying my daughter to term who has been diagnosed with anencephaly. The decision was immensely difficult, but I am simply not convinced that aborting her life would have been an easier choice for me. Aborting her after the diagnosis would have forced me to make a very final decision when I was not yet ready to do so and the process of the abortion itself is intensely brutal to the fetus, even though I understand that it is highly unlikely that she can feel pain. There are significant difficulties with either choice and that is because the condition itself is difficult and I do not think that can be emphasized enough. The condition is detrimental psychologically and emotionally, not the specific choice itself.

Women and families who choose to carry their fatally diagnosed children to term are often making the choice to grieve in their own way, as I am. I did appreciate the candid discussion regarding how we classify life - my husband and I had a great many discussions about that when we received the diagnosis. I am a follower of Christ and I do desire that my religious convictions inform all major decisions I make in life. But even for someone as deeply convinced of the value of the life of the unborn as I am, this decision was extremely testing. Please do not think that everyone who has deep religious convictions fails to analyze the true elements of this diagnosis and to engage in type of questions which you have posed here. We most certainly do.

Just Stumbled in.'s picture


To narrow the Subject down to a Meical Ethical debate as to wether anyones Child is ' Human' or ' Alive' is Crass, and of no Value either Scientifically or Morally. Now, if it was shown that Delivering a Baby with Anencephaly would have a catastrophic effect on anyone other than the immediate family then maybe, just maybe there would be room for such debate, but alas, ultimately, these Brave souls who choose to go full term just to have a 'peek' and a 'cuddle' and to 'smell' their infants need to be praised for their Bravery, supported, listened to, allowed to share their memories without fear of some Crass debate being opened by some pseudo Academic who's sole purpose is to be controversial for conbtroversy sake.

For Mum's everywhere.....I Salute you.

Perinatal Loss Nurse's picture

I thoroughly disagree with you

I am a Nurse and have worked in Pediatric and Neonatal ICU for many years and most recently have been doing Neonatal Palliative care - I care for babies who have life limiting conditions. I would argue that I have likely seen, heard and held more anencephalic infants than the author ever has or will and your description of anencephalic infants is profoundly inaccurate. These babies are not unconscious, they respond to thier parents, root, cry and Ive seenone breastfeed.

I would not dare inflict pain on one of them assuming they dont feel pain...they very much respond to stim. They are VERY MUCH live human beings and they do respond to love.

I would encourage you to not use such narrow definitions to define human life...the essence of humanity is more of a mystery than you might wish for it to be.

Blondie's picture

Good point nurse

I'm glad you commented. To say these babies have any level of consciousness is to acknowledge they feel the suffering in the end. I notice that women who birth these babies claim they were aware, laughing and like any other baby, but then they say that the child was unaware of it's suffering and that they're grateful for that. You can't have it both ways! Either they are aware of everything even the pain and gasps for air, or they're not!

You believe they have awareness, so you must believe they feel the suffering in the final hours or days. Many terminate based on the fact that they don't want their baby to endure suffering. To watch a little baby seize, gasp, shake and spontaneously cry out has got to be horrible! I am Pro Whatever works for you when it comes to these babies, but I would like to see the women who give birth to be consistent with awareness of these babies. Either they feel everything, or they don't! If they are a "real baby" or just a shell of a baby is not up for debate in my opinion. They are human beings who are loved no matter what their families choose. Awesome reply! :)

Crystal Rice's picture

I am 32 weeks pregnant with a

I am 32 weeks pregnant with a babyboy who has Been diagnosed with anencephaly and I am fully against abortion. I think it's heartless. I choose to go full term. And its not minutes of selfish joy. It's getting to meet a beautiful gift. An anencephalic baby is just the same as a baby who is healthy. And my babyboy will always be loved!

Chrissy's picture

mother of twins

I too am a mother to twins, one which lived almost 3 days and passed away from anencephaly. I would do it all over again. For someone to say my baby was not a human is unbelievable. We should not be able to decide when to end a babies life. These babies are amazing and deserve so much more. You should not be allowed to judge unless you have walked down this road!

Britt's picture

i just deliver my baby

i just deliver my baby September 30th 2011, she had anencephaly. she was the prettiest angel i've ever seen. i wanted to tell you i feel the same way, although i felt horrible being pregnant, i would do it all over again to see and hold my Anna baby again. Its a very hard road too walk down for you people who've never been down it.

Serendip Visitor's picture

A Response

I know this was written quite some time ago, but I just stumbled upon it today and wanted to comment.

"Who are we to be able to choose if a human being lives or dies, whether we should be allowed to extend their pain for a few minutes of somewhat selfish joy?"
There seems to be a contradiction in that sentence alone. In the first half, it seems that you are saying it's not our place to decide when an anencephalic baby dies, but in the second half, we're being selfish if we allow the baby to live. I have to say, as a mother carrying twins (one with anencephaly), I find it insulting to imply that our choice to carry to term is in some way selfish. I personally believe it was the opposite. I believe that it would have been selfish of us to choose to end our baby girl's life (and I use the word life very intentionally) prematurely. I agree with a previous response that being able to carry BOTH our babies to term is a good decision for us. We want every moment we have with her. It is horribly difficult, BUT she has already made such an impact on us with her short little life and I wouldn't trade that for an easier way out. Some of the most rewarding things in life are also some of the most challenging.

Cameron's picture

We chose life!

My wife and I found our baby girl, Caroline Grace, has anencephaly. We have decided to carry to full term. Please feel free to follow our blogs:

This journey is not easy, but it is a blessing from God. She may not live through the delivery, but she has already touched thousands of lives while in the womb. We love you baby girl!

 Joy 's picture

Caroline Grace

I support you all the way but most importantly God does too. Faith is hard to understand. It is not something you can touch but it is one of the most powerful feelings and states a person can experience. God be with you all. I know Caroline Grace will be in the arms of Jesus.

Chrissy's picture

twin with anencephaly

I had twin boys February 2010. One of my sons had anencephaly and lived for 2 days. It was the best 2 days of my life, I don't regret my decision at all. I have a blog: . Feel free to email me. I would love to hear from you. It is pretty rare to have twins (one with anencephaly). I hope to hear from you.

Anonymous's picture

A mother who objects to your conclusions

I want to expression my strong disagreement to your conclusion that a woman who carries a baby to term, knowing that the child will die at birth, places herself "in a detrimental psychological and emotional state." My son was diagnosed at 20 weeks gestation with anencephaly and I made the decision to carry him for the rest of the pregnancy. Long before we received his diagnosis, we had come to love him - we couldn't imagine intentionally shortening the time we had with him.

During his pregnancy, we named our son, sang to him, read to him, and recorded his heartbeat. We took him to special places that we had hoped to share with him during his childhood. His grandmothers made him hats, stuffed animals, and blankets. I decided that a natural birth would best for my son and for me, and I was able to give birth to him without any medical intervention. When he was born, my husband and I held him for the two hours of his life and took great joy in getting to know his little body, as most new parents do. We had professional photos taken with him, bathed him, took ink prints and impressions of his feet, and chose the clothing for his burial. Our closest friends and family came to the hospital to meet him and to celebrate and grieve with us.

Choosing to carry my son to term was the best decision I could have made and I do not regret it. It has given me memories and a way of knowing my son as an individual human being (yes, despite his lack of consciousness, he was a human being). It gave me an opportunity to love and parent him in the way that he needed, by taking joy in his life and preparing well for his death. It was not an easy thing to do, and I understand why other parents might not make the same decision, but it is a decision that has allowed me to heal emotionally and psychologically from the death of my son. I am now contemplating a subsequent pregnancy and I know that, should this baby also be diagnosed with a fatal condition, I would make the same choice again.

baby momma's picture

help answer this plz

my comment is i am 15 years old and 10 months ago i was 14 and ii was 6 and a half months pregnant and when i went and was going for my ultra sound to find ou=t if it was a boy or a girl which she was a girl inamed her jazmine she had anencephaly well my mom made me have her at 6 and a half monthsi actually had to give birth she lived about 5 minutes but that was the hardest thing i ever had to do in my life i just thought i would share this with yu all..

i dont understand why there is no cure for it it about killed me cuz i was so ready to hvave a kidd.

miss n luv my jazzzzy

 B.Halgas's picture

I am confused. Since these

I am confused. Since these babies are unconscious and feel no pain; how can doctors offer hydration and limited nutrition in order to make its short life comfortable?

Serendip Visitor's picture

Souls intact

Because they CAN live- Doctors don't know everything. they HAVE a soul- and respond to LOVE

Anonymous's picture


Check out this website....this women, like myself, gave birth to babies with daughter, Kayla Marie was born still. The baby above lived months....the are HUMAN BEINGS....babies that deserved to be recognized as so....

Veronica's picture

A mother's love and pain

I had twins in Sept. 2004. A boy and girl. Ethan Michael was small, early and healthy. Grace Elizabeth had anencephaly. I loved her just as much as him. We held her for 52 brief hours. She cried, she grasped my finger and held it her whole, short life. She even briefly opened her eyes. She reacted when she heard my voice. Some say this was just reflex. It may be, but if felt like life to us. Everyone said she looked like a porcelain doll and so very peaceful. To the mothers and fathers of an anencephalic baby, they are real. Her fingers were long, her hair a deep chocolate brown (her brother blond) and her face was a female replica of her brother's. I wish these babies were acknowledged more than something to study, but as someone to cherish.

Anonymous's picture

to a mother's love and pain

I too have had twins. My little tiny Laicey a mere 1lb 11oz was the prettiest baby girl. She lived for 20 mins, but she was very very very much alive to us. Hailey is now a happy healthy 15 yr old girl. If I could take it back and not have lived thru even knowing Laicey I wouldn't. I would do it all over again. She is just as much my baby as are my other 6 living children. She didn't have the reflexes that some babies have, but she had a hearbeat, and she was my baby.

robin d gill's picture

What does "anen" mean, the "pain" problem & holothurian haiku

I knew what it meant to be born acephalous, presumeably a far rarer disorder, as soon as I saw the word, but what would "anen" mean? You write clearly on what counts and I am hesitant to ask for you to add something of nominal importance, but by one sentence about the term itself might make it easier to remember . . .

You do have one contradiction in the article that needs attention. One sentence mentions that they feel no pain and another about extending "their pain." I suppose that in the first instance by pain you mean what is consciously felt and in the second how it is physiologically defined, but still . . . I would not even be able to eat a fish if i thought there was any moral problem with letting someone with anencephaly die and only think it wrong to let them die "naturally" rather than giving them opiates so their bodies at least may perhaps "feel" good in some way as they die. Pardon another blurb, but i also wrote a book of about 500 pp about a creature made of smart material that lives perfectly well without even a ganglia of brain: the sea cucumber (check out Rise, Ye Sea Slugs! if you are curious).

Anonymous's picture

Well-written and insightful.

Well-written and insightful.