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

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