Pregnancy is supposed to be a time to rejoice and prepare for the baby you’re about to add to your family. But every year, many people receive the news that the fetus has an anomaly or genetic disorder that is incompatible with life.
Getting the diagnosis
Prenatal testing is used to determine the risk of genetic disorders and other birth defects during pregnancy. Birth defects affect about 1 in 33 babies every year in the United States, according to the Centers for Disease Control and Prevention (CDC), and account for 20 percent of all infant deaths.
There are many ways to have prenatal screening tests done, from ultrasound to blood tests. Many people go into prenatal screening not anticipating that anything is wrong, but simply excited to see their baby or get more information, like the baby’s sex. This happy anticipation can make a concerning result even more upsetting.
Many of the initial tests for genetic disorders are screening tests, so they only indicate whether a baby is at an increased risk of a problem, not whether they definitely have a certain disorder. If screening test results show an increased risk, further testing may be done in the form of a diagnostic test to get more definitive information, according to the American College of Obstetricians and Gynecologists. Diagnostic tests, like amniocentesis, are more invasive and carry some risks, so some families may opt not to have them, or opt for more screening tests. There is no one right answer for every family.
One thing these tests look for is called aneuploidy, which means there are missing or extra chromosomes. Most aneuplodies are incompatible with life. They occur in about 20 percent of embryos; however, not all of these embryos implant in the uterus, and many result in miscarriages.
Choices to make in care
Once your providers are certain, or as close to certain as the testing allows them, that your baby will not survive, you will be asked to make a series of decisions. The choices that are offered range from the termination of the pregnancy to carrying the baby to term or to as close to term as possible. There may be legal limits on the choices that you have available, depending on where you live, or you may have personal limits that you take into account.
In some situations, you may need to switch care providers. For example, if you have been seeing a midwife or a regular obstetrician for your prenatal care, you may need to switch to a doctor who specializes in high-risk patients. You may also need to switch to a different hospital to get the best care possible, even if it is short-term care. In many places, there may only be one option for perinatal palliative or hospice care.
Choosing to carry the pregnancy to term
If you have made the decision to carry the baby to term, you will go through an adjustment period. It can be extremely difficult to come to the realization that although you are currently pregnant, you will not be bringing home a baby. Mothers report a variety of feelings during this time. Some say they feel at peace with their decisions, while others find themselves fearful. It’s important to take care of your mental health during this time; talk to your doctor about support options that are available to you.
One of the hardest things may be dealing with questions from strangers.
“I remember standing in the grocery store, very pregnant, when a woman behind me started with the typical things people say to a pregnant woman," remembers Amanda*, a woman who was pregnant and knew her baby would not survive labor. "Then she said, ‘Your baby is going to be so big you won’t be able to carry him without a stroller.’ What I wanted to do was to tell her I’d be happy to do that if only it were possible. I just turned around and left my cart while crying.”
Some mothers opt to just play along, saying it helps them feel more connected. Rosie, another women in this situation, remembers using it as an escape.
“Someone would ask me something about the baby, [and] I’d make it up and pretend my dreams would come true and we’d take the baby home,” Rosie says.
Deciding on birth options
Depending on the diagnosis, you may have a relatively normal labor and birth. Sometimes, however, a vaginal birth may increase the likelihood that your baby will die during the delivery. This may mean that you are offered the option of cesarean birth. Otherwise, you don’t usually need to alter your standard birth plans, including whether you had planned to go unmedicated, use an epidural, or have a vaginal birth.
One discussion to have with your health care team is how to handle fetal heart monitoring during labor. Because the heart monitoring is used to tell you how the baby is doing in labor so that your practitioners can intervene, you may decide that this is something you wish to forgo, or minimize. It’s worth a discussion with your doctor or midwife. Remember, you can change your mind before or during labor.
Ask your doctor if they can recommend a perinatal hospice program, or if one is affiliated with your hospital. A perinatal hospice team is made up of experienced professionals who work with newborns who will have a complicated and short life. The team includes doctors, nurses, social workers, health aides, and more, each playing a crucial role in helping your family. Their goal is for your family and your baby to make the most of your time together with as little stress and pain as possible, helping you figure out what medications and medical procedures will be the most beneficial, and more.
Deciding whether to bring your baby home
One option that most people do not realize is that even if your baby is not expected to live, or has already passed away, you may still allowed to take your baby home. This may not be for every family, but many families prefer to go through this experience from the quiet and privacy afforded in their homes. Families get to live a short amount of time with their baby at home, and the perinatal hospice team may be able to go with you to provide care.
Talk to your team about this option. It can help you feel more at ease.
“Bringing our daughter home sounded like a bad idea," Rosie remembers. "But I’m so glad we did it. We were able to relax and not worry about hospital rules. We had visitors over to meet our baby and do things on our terms. It wound up being the best thing we did. I treasure the memories of holding her in her room, in her chair, with her things.”
Planning a funeral while planning a birth
You may be asked what funeral arrangements you want to make while you are still pregnant. The truth is that you have time, even if it feels like you don’t. You can talk to the social workers at the hospital to get advice, and talk to funeral homes to find one that can be helpful to you. You can also ask about home funerals as well. Some families prefer this option.
There are two types of donations that can be made after the death of a baby. One is the donation of organs, which may be available in select cases. This may alter some of your plans, but may be an option that appeals to you and saves the lives of multiple other infants. If you want to pursue this option, talk to your doctor; you can also learn more about pediatric organ donation at OrganDonor.gov.
The second kind of donation is breast milk donation. Your breasts may produce milk without regard to what’s happening with your baby. If your baby lives for a brief time, you may use this milk for feeding. Once your baby has passed away, you may not know what to do. No matter which option you choose, speaking to a lactation consultant is critical, even if you simply want to know how to stop the milk supply. This will help you prevent mastitis and pain. You may also choose to donate your breast milk to a milk bank for a while. Some mothers do this for a couple of weeks, others for many months. Some say it helps them slowly ease away from the hormones, but also allows them a chance to help other babies in the process.
When you are facing the death of your baby, there are many hard decisions to make. Thankfully, you don’t have to do this alone. There are teams of people to help you understand your options and help you through this impossibly difficult time. Don’t be afraid to reach out for support.
Last names have been omitted in this article to protect privacy.
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Robin Elise Weiss, Ph.D., LCCE, CLC, AdvCD(DONA) is a childbirth educator, doula, founder of Childbirth.org, and the award-winning pregnancy and parenting author of “The Complete Illustrated Guide to Pregnancy” and more than 10 other books. Between her nine children, teaching childbirth classes, and attending births for more than two decades, she has built up an impressive and practical knowledge base. You can follow Robin on Twitter @RobinPregnancy, Instagram, and Facebook.