Anencephalic Pregnancy

In late January of 1984, I became pregnant. It was a bit of a surprise because I was still breastfeeding my daughter, and I was told that I could not get pregnant while breastfeeding. That would mean that my daughter and the new baby would only be 16 months apart. It was not exactly what I was planning, but It didn’t take long to look at the positive side. They would be close in age and be able to enjoy each other’s company, especially if it was a girl.

The pregnancy was going very well. I didn’t feel sick and still had a good amount of energy. We were preparing my daughter for her new baby brother or sister. I started feeling the baby kicking, and it was an exciting time for us all. I was scheduled for my 16-week ultrasound, which did not go as expected. A lot of this time is still a blur. I can’t remember if my husband was with me or not. I just remember the doctor telling me that something was wrong. The baby had a great heartbeat and was developing fine, except for the head area. He could not tell exactly if it was the brain or the skull. He had never seen anything like it, so he sent me to get an ultrasound at the hospital to confirm his suspicions.

Unfortunately, it was confirmed that it was most probably an Anencephalic baby. This means that the pregnancy seems normal, but once the baby is born, it cannot survive outside the womb.

Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). As the neural tube forms and closes, it helps form the baby's brain and skull (upper part of the neural tube), spinal cord, and back bones (lower part of the neural tube). There is no way to treat anencephaly. Babies born with this condition will die before or shortly after birth. Source: National Center on Birth Defects and Developmental Disabilities.

My doctor told me the odds were one in a million. That certainly didn't make me feel any better. I recently looked up the stats, and it's a rare type of neural tube defect that affects about 1 in 4,600 babies. Maybe he told me "one in a million", so I would not hesitate to have another baby. After the second ultrasound, they wanted to do an Amniocentesis. This test checks if your baby has a genetic or chromosomal condition, such as Down's syndrome, other syndromes, or defects. It involves removing and testing a small sample of cells from amniotic fluid, the fluid that surrounds the baby in the womb (uterus). I was hesitant because it can also cause other issues, like miscarriage. I was told by my doctor that it was the only way we could know for sure if it was, in fact, the issue.

I decided to go ahead with the amniocentesis. The terrible part was that it took nearly 6 weeks to get the test done and get the results back. The results came back positive, and then I was given the choice to terminate the pregnancy or go full term, and the baby would die as soon as it was born. I was 22 weeks pregnant and could not have an abortion, so I would have to be induced and deliver the baby. The thought of having a baby growing inside me and knowing it would not survive was very difficult. It was a terrible experience!

The staff at the Royal Victoria Hospital had no empathy and treated me horribly. I won’t go into detail, but around 6 months after I delivered, I wrote a letter to them to share my experience in hopes that they would better their staff and how they deal with their patients so that no one would experience what I did.

On July 12th, 1984, our Angel baby girl was born. Her birth date would have been around Nov 7th, which was my friend's birthday. It still brings me sadness, and I think of her often. We would have named her Elizabeth after my husband's Aunt Betty.

I was so young and hurting, and I made decisions I probably would have done differently today. They said seeing the baby was not a good idea since her head was badly deformed. So I didn’t. Then, they asked me if I wanted to donate the baby for research, and I thought it was a good idea. If I could save someone else from going through this pain, maybe research could tell us why these pregnancies happen, and then I was 100% in. Now, nearly 40 years later, we still don’t have any answers.

I thanked God daily for having my daughter and that she was healthy and happy. I used to call her my little sunshine. On those days that I would be so depressed, she always managed to lift my spirits. Years later, I discovered that a “Sunshine baby” is a living child born before a pregnancy loss.

I think back to the following weeks after I was in the hospital. Two weeks later, we had a big 1st birthday party for our daughter, and I don’t remember anyone ever mentioning anything about the pregnancy. It was like it never happened! My husband and I didn’t talk about it either. It was just too painful a subject.

A few weeks later, I had a follow-up appointment with my doctor. He told me that if I was thinking of having more children I should do it sooner than later and that the chances were slim that I would have another problem pregnancy. I knew that if I thought about it for too long, I would be stressed out and would not want any more children. I certainly didn’t have any fertility issues because soon after that appointment, I was pregnant again and had a very healthy boy. 

They call the birth of a child after pregnancy loss a Rainbow baby. The name draws on the rainbow symbol, representing beauty after a dark time.