I wrote this article a few years back. As I study the teachings of Abraham, I am struck with the idea of our constantly being presented with contrast, and out of that we “shoot out rockets of desires”. Looking back on this experience 20 years later, I can see now how powerful these rockets can be.
During the 1980’s while I was working as a community midwife, a young woman having her second baby was visiting me for a prenatal checkup- she was due in a few weeks. I was feeling her belly to see where the baby was lying and was having a hard time determining which end was the baby’s head. We arranged a visit to her doctor, and then for an ultrasound. Imagine our horror, when it was shown that the baby’s head had not formed at all- a rare condition known as anencephaly. Our collective horror stems from the fact that these babies have been referred to as “monsters” in the medical and nursing literature.
This experience led to my writing a letter to Dr. Harry Oxorn MD, an obstetrician, and author of a standard medical text entitled “Human Labor and Birth.” I received a letter back, with his profuse apologies, saying that he would remove that offensive term from his upcoming(1986) edition.
My client had her labour induced, and spent two days waiting for things to be “ripe” to actually go into labour. What a poignant time! Imagine birthing knowing that your baby will die in the first couple days. Add to that the underpinning of having heard and read that your baby is known as an ancephalic monster. Imagine how we all felt, the medical and nursing staff, anticipating that a monster was soon to be born.
On the third day, her waters were “broken” and serious labour ensued. We had many staff during those long days and nights- some sympathetic, some fearful, some critical, “Why did you not have an early ultrasound?” Finally, late on the third day, an 8-pound baby girl was born. The mother had asked me to see her first to let her know how she looked. And, oh my, what a sweet face and rosebud lips, but the entire back of her head was missing with only a small amount of exposed brain tissue. I had brought a pink cap and blanket from home, dressed her, and handed her to her mom. With the hat on, she looked just like a “normal” baby. She died three days later in her father’s arms.
There was a funeral for the baby with many friends and relatives in attendance. Her parents returned home to spend the next few months quietly grieving her short life. I spent many hours both on the phone and visiting them in person helping them integrate this experience into their lives.
It wasn’t until a few years later, while studying with Oxorn and Foote’s “Human Labor and Birth”, that I glanced at the section on anencephaly. I felt like I had been punched in the stomach when I saw the picture of a baby with the back of its head missing, and read the description of an “anencephalic monster”. I couldn’t breathe and I felt such rage at the inhuman term. I picked up a pen and wrote a letter to Dr. H. Oxorn, care of his publisher.
I asked him if he had ever thought about the fact that most parents start to fall in love with their baby while he/she is still in utero. That the soon-to- be child starts to have a life, a future, and a past all at once before birth. How DARE he and all other writers of textbooks refer to these babies as “monsters”! What on earth could be gained by perpetuating that term? I posted the letter the next day feeling that I had been through a great catharsis.
Imagine my surprise when a month or so later, I received a letter from Dr. H Oxorn. In it, he apologized for not having given more thought to the offensiveness of using the word “monster”. He explained that the term had its origins in the Middle Ages, and certainly had no place in this present day and age. He was in the process of completing a new edition (1986) of his book, and would change it. I wept while reading his letter.
Since 1986, when student midwives, nurses and doctors study birth defects in “Human Labor and Birth” they are not reading about an anencephalic monster, but are reading about a baby with anencephaly. The words we use are very powerful. I encourage parents, midwives, nurse, doctors and others to correct a perceived wrong. It takes the willingness to take pen to paper (or finger to keyboard) and to write from the heart. I noticed with gratitude that a baby born recently with “two” heads was not referred to as a monster, but as a baby. I felt that the mother, her baby, Dr. Oxorn, and I had played a small role in effecting that change.
For more information go to http://anencephalie-info.org
March 15, 2008 at 11:46 pm
I was so surprised to see this article I had to respond. For most of my 69 years I heard Dad (who has since died) talk about how beautiful our little baby sister was who died at birth. He had held her in his arms. She was anencephaly and Dad just said that the back of her head was not fully developed. Even in old age there were tears in my Dad’s eyes remembering. Recently we found the medical information on little baby Mary that was in a box stored away. My other sister called me and read the description. When she said they called her a ‘monster’ I felt sick to my stomach. I was horrified and angry. I thought how Dad and Mom must have felt to read that description. I am glad now that it is no longer used. Thank you for sharing that wonderful article.
March 16, 2008 at 3:11 pm
You are very very welcome…
September 28, 2008 at 2:01 pm
Hi,
I would like to say how heartfelt your story is.. I have a perfect 2 year old daughter but on my 2nd pregnacy I was informed that my baby had Anencephaly at my 20 week scan. I had never heard off Anencephly and when it was discribed to me, I myself thought that my baby would look..I guess..like a monster..and at first I said I didn’t want to see my baby when it was born. The Midwifes were fantastic..Labour was started at 20 weeks and 5 days..I by then I had decided that there was no way I could give birth to my baby and not meet them. Chloe was born 30th June 2008.. they took her straight away and dressed her in a gown and hat..she was beautiful..perfect face, body, hands and feet..My husband and I held her, she was only slightly bigger than my hand from the top of her head to the bottom of her feet and she looked so peacful..we handed her to the Angels and we are so glad we met her. The image I had in my head was so far from the truth. They are not monsters.. they’re beautiful little Angels. She’s as specail to us as our first daughter.
September 29, 2008 at 10:02 pm
Thank you for sharing your story…..and the couple in my story, who already had a son, went on the next year to have a healthy baby girl. I was with them when she was born at home into loving hands.
With love,
Aryana
October 9, 2008 at 2:17 pm
i understand how you avefeel my friend also gave birth to a baby girl (ancephalic but the baby died 7hours afetr labour..
November 21, 2008 at 2:31 am
Your story made tears come to my eyes I gave birth to my baby girl she also had Anencephaly and they put her in my arms from the time she was born till the time she passed away she was born April-24-2008 and my nurse that I had made a hat just for her head it was a cute pink hat and dressed her for me my little girl was so cute and when you looked at her she did not look like she had anything wrong with her…I thank god everyday for giveing me such a gift she was and always will be perfect to me ….
December 15, 2008 at 2:02 am
All of your stories are so great to hear. I just found out last week (at 18 weeks) that my baby has Anencephaly. I have not made a decision as to being induced early or not, but hearing how much your babies and friends babies are loved gives me so much comfort, and makes me excited to meet my beautiful baby girl.
December 16, 2008 at 1:22 am
Dear Jen,
There is much love for your here.
Aryana
December 16, 2008 at 1:22 am
Dear Jen,
There is much love for you here.
Aryana
February 2, 2009 at 7:21 am
My little girl, Courtney was born with anencephaly in 1979. I was told that I needed to not see her and to just forget her. Well, I think of her everyday, 30 years later. I never saw her, never held her, and I never ever forgot her. I wish I had just held her and loved her for as long as I could. She was a month overdue and lived for 3 1/2 hours. I carried her for 44 weeks.
February 6, 2009 at 3:14 pm
Thank-you so much for this website. 3 days ago we found out that our unborn baby girl has anencephaly. I am about 19 weeks. My husband and I have decided induction is our best option. It’s has been such a heartbreaking decision. It is so comforting to hear the other mothers stories. Very soon we will meet our baby. I already know that she will be so beautiful.
February 13, 2009 at 6:25 am
hi, in feb 2008 at my 5 month sonogram i was told that my baby had anencephaly. as i never heard of this before and i have a perfectly healthy 2 year old son i listened to the doctors, which i regret to a certain degree.i was told the best thing to do since my baby was not going to survive was to abort. i was told that the pregnancy was also a risk to me. i felt rushed though i did get a second and 3rd opinion. My husband and i made the decision to abort on feb 21 2008. I never stopped thinking about my baby girl, who she looked like and I always wonder if i made a huge mistake. now more than ever because i recently found out i am pregnant again, im trying not too worry but im secretly terrified. now as i read all these stories tears fill my eyes and i wish i had made a different decision and carry my baby girl full term, i wish i got to look in her eyes, hold her hand, my this is nerve wrecking, i never saw such stories until tonight, well all i can do now which i always do is pray and ask god for forgiviness.thanks for the stories… truly inspiring. i only wish i was as strong as you ladies.
April 15, 2009 at 12:22 am
I found out at 19 weeks about my baby and also bearing the pain of my fiance leaving me I felt I could not go through to the end of my pregnancy and so terminated… I have read stories of how doctors have made mistakes and also read how babies have survived and it feels me with such pain..even now…. When I think of Paige I still feel a deep sense of loss and guilt. I wasn’t given the chance to hold her, but they took a photograph, which is so blurred.. I can make out her feet and hands and her tiny fingers.. I was blessed with another child, but will never forget her..
June 9, 2009 at 10:36 pm
It’s amazing the stories that I have just read and I know how it feels. My first pregnancy was diagnosed with Anencaphliy. My termination was completed at 17 weeks – Aug 2008. The images i saw on the internet were very disturbing and the term “Monster was used in many websites”. I was very scared to see my baby but my husband realised it was very important to see our baby because he was completely different to the images that i saw on the internet. And i am so glad that i did as it put my mind at peace and in my eyes my baby looked amazing and i will not forget him. I am pregnant now and today i had my first scan at 11 weeks & 5 days and unfortunatly my baby has the same condition. The doctors have said it is rare that this happens twice but it has. Final decision is in 2 days but I guess i have to go ahead with the termination as waiting will not change much. I beleive that everything happens for a reason and I’ll either know what that reason is or never will but it is always for the persons benefit. I beleive that God wants to test my patience and faith and I pray & hope that my husband & I will pass! To all the mothers out there and the mothers to be, all I can say is that you’re all very strong & special to go through this. Goodluck and bless you all.
June 16, 2009 at 2:52 am
Dear Ray,
Thank you for writing to us. God bless you too.
Let us know how you are if you feel like it.
Love,
Aryana
July 1, 2009 at 6:58 am
I found out 9 days ago (seems like an eternity) that my first baby at 19 weeks had anencephaly. My husband and I were devastated. We decided to induce labor (instead of a D&E) even knowing it could take between 1 and 3 days. After 23 hours of labor, my daughter was born on Saturday, June 27th, 2009, at 12:27pm (3 days ago). She had no heartbeat at birth. She was baptized and named Camellia Frances. We took pictures and held her for 2-1/2 hours. I kissed her little feeties and hands and cute little button nose. We are so completely heartbroken but are trying to pick up the pieces. Where do we go from here trying for number 2? (We did IF and I am almost 39). What are the chances of having a second baby with anencephaly? I don’t think I could do this again but we would love a child. And when do you stop asking yourself “Why?” and doing all the “what-could-have-beens” in your life? So self-destructive. I miss being pregnant and I miss that I’ll never be called Mommy. And my dear, sweet husband would have made the best stay-at-home dad EVER! How do you move on? Still a crying mess!
July 9, 2009 at 1:28 pm
I found out in July 2009 that my baby at 17 weeks has Anencephaly. That was 8 days ago and I still do not know what to do. I think there is no “right” answer. What ever I do will never feel right because you will not have a baby at the end of this. I have had a previous stillbirth (due to other reasons) and the hardest part of the whole ordeal is leaving the hospital empty handed. With nothing. I was going to wait until 24 weeks to be induced since that is considered viability but I don’t think I can wait 6 more weeks. My family will surely judge us. If there was even a 1% chance this baby would live I would have kept him in a heartbeat. I tried six months to get pregnant with this baby and wanted him sooo badly. I too turned down the D&E, it is not something I wanted to do. I think part of the reason I am waiting is I know what a stillbirth feels like and I’m not ready to feel that pain yet. But it is inevitable. I hate how nothing feels right. There is no answer no solution.
The cruelest part of having a baby with anencephaly is your baby will never induce your labor. No matter what you have to choose what day the baby will die.
July 15, 2009 at 6:35 am
hi i am 19 years old and this would be my second baby. I found out at 20 weeks that my baby has anencephaly. She is a very healthy little girl. My doctors told me to carry her full term or to abort. i asked to be induced but my insurance does not pay for it. i am not almost 22 weeks and my heart is broken. i want to see her and hold her in my arms forever and always. i want to protect her and hear her cry because she needs me. i have felt her kicking and moving and it hurts me to know that she will not come home with me. i do have a son who is 16 months and he is healthy. He kisses and hugs and blows on my belly waiting and antipating the arrival of his new sister just like i am. How am i going to tell him he wont be able to play with her or protect her. I wanted her so badly. Its killing me inside. I dont even think that i can bring myself to have any more children in fear of the samething happening.
July 20, 2009 at 5:12 am
Hi My friend just gave birth to a wonderful Baby Boy!!! He was Born May 1st 09 and weighed 5lbs 6.3oz!!
I was frieghtened to see what he would look at but something just drugged me to the Hospital I got into the room and there he was in his daddies arms he was perfect just like a normal Baby all 10 fingers all 10 toes cute cheeks and A smile that stole his mommy and daddy’s Heart!! THey were in love with him and still is!! I was there almost all of his life he only lived for 7hours and 53mins!! But to his parents it was the world to them!! Everyone may be scared to see this but on that day I meet the most buatiful angel in all of heaven!! Babies with this deformity are special and all the families that are going through this now!! It is tuff but just think when the wind blows your baby is blowing you Kisses letting you know that he or she loves you!!
Also ifyour baby is diagnosed with this give him/her a chance you will get a great reward from God!!!
–Amber
RIP Lil Tony!!
September 27, 2009 at 7:18 pm
I am so happy I found this website. Just this week, my partner was induced and gave birth to our beautiful daughter, Becket who had been diagnosed with anencephaly earlier this week. We were stunned by the diagnosis, and terrified that our daughter would look like a monster. We coudln’t understand why the hospital staff kept telling us that we would actually want to hold our baby after she was born. It seemed like a cruel joke. But in the end, holding our dear daughter was the best decision we’d ever made. The time we spent with her was truly a gift-my only regret was that our time with her was way too short.
In Loving Memory of Becket.
Thanks to all of you for sharing your stories. I’ve found comfort in your stories.