If your baby has a problem incompatible with life before birth

Making difficult decisions when a pregnancy isn't normal

You may find out that your pregnancy is not normal and your baby has significant problems. To hear there is a genetic problem or syndrome that may be incompatible with life can be devastating. A really awful thing is happening to you and your partner. You may have a full range of emotions, but be gentle with yourself. You are entitled to whatever feelings you have. These feelings may include:

shock or disbelief
guilt, as if you did something to cause this condition
grief at the loss of the normal baby you expected
isolation (aloneness) in your anguish

You may find it helpful to communicate with others after your health care provider first talks to you. Keeping a journal and relying on family and friends may help ease your burden.

Be aware of your feelings and try to express them. Holding them inside won't make them go away. Anger is a real and common response. If you are angry, be aware of it and talk about it. It is OK to be angry.

Choosing to continue or end a pregnancy

Having to decide whether to continue or to end the pregnancy is a heart-breaking situation. You will need to think about:

your religious beliefs and values
available medical treatments and outlook
the baby's best interest
how you could respond to your baby's disability
your finances
choosing adoption
following through with your decision
how to handle death

You and your partner may want to write a list of the pros and cons of each decision and discuss each issue.

Any decision you make will take courage. You and your partner may choose to end the pregnancy rather than expose the child to a life filled with the broad scope of a disability. You may decide to take on the challenge of a disability. Or you may decide to choose adoption for your baby.

Whichever path you take, please know that there is no one right decision for all families. Making the final decision can be extremely difficult. It's a decision that could affect the rest of your life.

Please see grief resources for information about making this difficult decision.

Continuing the pregnancy

The uncertainty during the remaining weeks of your pregnancy may be difficult. You may feel as if you are in limbo, not knowing what is going to happen. Your emotions can range from anger to deep love. The movements of your baby may feel normal, yet you may find it hard to continue developing an attachment to the baby, thinking you will have only a short time together. You may want to attach but at the same time be afraid or you may feel ambivalent, sad or angry and not want the pregnancy to ever end.

Ending the pregnancy by delivering early

You may decide that choosing to deliver early is the best decision for you. Your situation may be that your health is in jeopardy if you continue the pregnancy. Bedrest may not be an option depending on your health or family situation.

During this difficult time in your life:

It is common to have second thoughts and to be nervous about your decision.
Before the delivery seek counseling or talk to someone to ease your concern.
Read about the options available. Know what the procedure is and ask questions.
Call your birth center and ask to talk with a doctor, nurse, social worker or other staff member with experience in a situation like yours.

Planning for the birth

If your health care provider tells you that your baby has a medical problem that is incompatible with life or that your baby has died, you face the remaining tasks of pregnancy, labor and birth with a different, unexpected perspective. You may have either a vaginal delivery or a Cesarean delivery. Ask your health care provider about finding someone to help you prepare, such as a childbirth educator, a labor or birthing nurse, or a specialist in this area. Birth preparation classes should be available for you to meet your needs.

If your baby's diagnosis is made before labor begins, you may have a few days to prepare yourself and make plans. Many couples find this time helpful. It isn't the kind of labor and birth you thought you would be preparing for, but it is still the birth of your baby, and you can make it a meaningful experience that can help both of you grieve and recover. Ask your hospital if someone is available to help you in this process. Here are some ways you can plan for the birth:

Meet with someone in your hospital who can help you put together a birth plan. This will help you understand your options and the hospital staff to understand your wishes.
Reconsider the people you want to be with you during labor. Perhaps you'd like to invite grandparents or other siblings to come "say hello and goodbye" to your baby. Or perhaps you'd like as much privacy as possible and don't want any visitors or family. Let your birth center staff know your wishes.
Many parents find photos to be priceless mementos in the days and years to come. Consider bringing a camera with you to the hospital. If you forget, ask the labor nurses -- some birth centers have a camera you can borrow. Ask a staff member to help you photograph your baby. Pictures such as these have been found meaningful to many bereaved parents.
Ask about how long labor and delivery will take. The procedure can take up to 24 hours or longer before the birth occurs. The day before your scheduled labor, your doctor may insert a substance into your cervix that absorbs moisture and dilates (opens) the cervix. This will be done in your doctor's office. Other medicines in the form of vaginal suppositories will then be given to induce labor. Other medicines given by intravenous (IV) line in your arm will help make you as comfortable as possible.
You may want to participate in the labor and birth as fully as possible to help the grieving process. Heavy sedatives (medicines to make you sleepy) can dull your awareness of the delivery, delay your grieving, and slow down your healing.
After the birth you will likely stay in the hospital overnight. You may have your choice of returning to the birth center floor for recovery or going to a surgical or gynecological floor after your baby's birth. Don't be afraid of returning to the birth center. The obstetrical nurses can offer understanding and support. Be sure to talk with your health care provider about your options.