Like most of us, Anne had an opinion about abortion. She was against it. Anne had two healthy children, and she could not imagine life without them. In her mind, terminating a pregnancy for any reason was wrong. Period. Then she became pregnant with her third child.
On her first ultrasound at 12 weeks, a major fetal abnormality was detected. She was referred for Maternal-Fetal Medicine consultation, and our ultrasound confirmed what she dreaded. This baby did have a devastating birth defect, an open neural tube defect called anencephaly. The neural tube is a collection of cells that develop into the brain and spinal cord. When this tube-shaped area fails to zip closed in the first few weeks of pregnancy, the developing brain will not be covered with bone or skin. This means that the main part of the brain, the cerebrum, which is responsible for thinking, seeing, hearing, and consciousness, is left exposed to the amniotic fluid, resulting in degeneration of brain tissue. Unfortunately, anencephaly is a condition which is not fixable and is not compatible with life outside the uterus. Almost all babies with anencephaly die prior to delivery or in the first few hours or days after birth.
For Anne and her husband Will, there was a period of time for them to come to terms with the diagnosis. She was carrying a child who was not going to live, and they had to grapple with the emotions of grief that accompany loss: denial, anger, frustration, guilt, sorrow. This process takes some people minutes; for others, days or even weeks. When they were ready to start asking questions, we talked again.
Anne’s pregnancy was still in the early stages. Most of their friends didn’t even know that they were expecting. Anne and Will had the option of terminating the pregnancy or continuing it. Termination of pregnancy had always been a clear question of right or wrong for Anne. In her mind, someone either chose life or murder. With this diagnosis, some brand-new thoughts occurred to her.
The reality of carrying a baby with a life-limiting condition
- If Anne continued the pregnancy, she would feel fetal movement, deal with all the common discomforts and possible complications of pregnancy, experience labor, and in the end, none of this would help. Her baby would not survive.
- Continuing this pregnancy would not just affect her and Will. Their young son and daughter would also suffer heartbreak. They would also grieve the loss of a sibling.
- Beyond her own family, the whole world loves a pregnant woman. Strangers in the grocery store would make conversation, with remarks like “Is this a boy or girl?” and “You must be so excited!” These are kind, well-intentioned remarks, and they don’t mean to hurt her. But every encounter would remind Anne of the life that won’t continue. Would she tell them? How many conversations like this would she have to endure?
- What about her baby? Would she suffer? Would Anne suffer? Was it selfish to continue the pregnancy, or more selfish to terminate now? If she continued on, how could she watch her baby die? Was she strong enough? Would her friends and family condemn her if she elected to terminate the pregnancy? These people, good people, had no idea of the pain that she and Will and their kids would experience.
These are some of the complex aspects of this decision that most people never consider. And the right answer is different for different women.
Deciding whether to terminate a pregnancy
The heroine of our story, Anne, is actually a composite of many women I have cared for over the years whose babies had anencephaly. So instead of telling you about a single decision about anencephaly, I’ll tell you about several, to illustrate how even the same diagnosis can be seen in many different ways.
One patient, Hannah, received the diagnosis of anencephaly early in pregnancy. After thinking through all options, she elected to have a termination of pregnancy. She wanted to try again as soon as possible. She began taking supplemental folic acid (which is very important if you have had a pregnancy affected by any open neural tube defect) and became pregnant again about six months later. Although she was nervous, Hannah had an uneventful pregnancy this time and had a healthy baby. For her, she believed the termination of her anencephalic pregnancy was the right decision.
Another patient, Jamie, found out in the second trimester of pregnancy that she had a fetus affected by anencephaly. Jamie was a teenager at the time, just seventeen years old. A diagnosis like this is devastating for anyone, particularly someone like Jamie, who had little family support and no real frame of reference to help her cope with this. At our initial visit, she asked no questions, didn’t want any information about anencephaly, didn’t want to talk about options for managing the pregnancy, and didn’t want to plan for the care of her baby. Making no decision was a decision in itself. Jamie did not keep most of her appointments with her OB provider. She didn’t want to deal with any difficulties until she absolutely had to. As with many pregnancies with anencephaly, labor did not start until she was almost 2 weeks past her due date. The neonatologist (newborn specialist) visited with her when she came to the hospital in labor. As overwhelmed as she was, she agreed to a course of care and comfort for her baby. When he was born, he was wrapped in a warm blanket, and Jamie held him for the half hour that he lived.
Delia’s fetus was diagnosed with anencephaly in the early second trimester. She was referred to me for confirmation of the diagnosis, and to talk about the pros and cons of continuing the pregnancy or terminating. Ultimately, she decided to continue the pregnancy. She and her husband reached out to LifeGift, an organ donation service, to see if their baby daughter could be an organ donor after she passed away. The requirements and procedures for newborn organ donation are different than those for adults. In our area of the country, a baby must be born near term, weigh at least a certain amount, and the parents must be carefully counseled about this option. Delia’s daughter was born at term and passed away peacefully a few hours after birth. Her kidneys and corneas were donated that day.
Delia received letters about a month later telling her about the children who received these organs. Although the recipients’ names are kept confidential, Delia calls the center for updates about how they are doing. For her and her husband, the choice to carry the pregnancy to term and donate organs gave this pregnancy meaning. In the darkness of this experience, this decision gave them some peace.
Anencephaly is simply one example that illustrates how deeply painful it can be to consider pregnancy termination. I’m not trying to change your beliefs about abortion. But no matter what your stance is, no matter what you think you know, consider that each woman here was confronted with a situation that no one should have to experience. They made the best decisions they could. If you are tempted to judge, remember that these women sometimes judge themselves even more harshly. When the pregnancy is over, they second-guess themselves, sometimes for the rest of their lives, about their choices. They need our compassion and support, not more criticism. We all do the best we can. My best may not look like yours, but hey – best is best. Since 40% of women in the US have had an abortion at some point, chances are that someone close to you has experienced the anguish of making this decision. Maybe it’s you. Maybe it’s time to share your experience with a friend. As painful as it feels, the more you want to just move on and forget this chapter of your life, you may be the best person to connect with and comfort someone going through this hell.
You’re safe here. Go ahead.