Learning that your unborn baby has a birth defect or will have medical challenges after birth can raise complex emotions. You may feel frightened and uncertain about the future, sad that your baby may need to have surgery after birth, and you may even feel guilty for thinking you somehow “caused” the condition. At the same time, you may have many questions for which there may be no clear answers.
There is no “right way” to react to a diagnosis in pregnancy, and your feelings may change repeatedly throughout pregnancy. You may feel emotionally numb or have moments of denial when you think “This can’t possibly be happening to me/us.” You may feel angry, fearful or optimistic that everything will turn out fine. To manage these overwhelming feelings, some expectant parents research everything there is to know about their baby’s diagnosis, while others intentionally limit themselves to only the information they receive from their medical providers at any given time.
Whatever you’re feeling — or not feeling — it’s all normal. Your feelings may change from day to day. This is a difficult time and many people in your life may not be able to relate to what you are going through. Try not to put pressure on yourself or your partner to act or feel a certain way.
Here are some common concerns and emotions parents face, as well as recommendations for coping and helpful resources.
You are not alone
It may feel like you are the only one who has been through this, especially if your friends are having “typical” pregnancies. But the reality is that birth defects are quite common, and can affect anyone, regardless of ethnic background, socioeconomic status or where you live.
It’s normal to start seeking out information and answers wherever you can. If you research your baby’s condition online, stick to websites from trusted sources. Look for sites with URLs that end with “edu,” “org” or “gov.” Many parents find it helpful to tap into organizations and social media communities devoted to their baby’s diagnosis. If you read something upsetting, keep in mind that everybody’s situation and perspective is unique. You can also ask your medical provider to connect you with other families who may have gone through similar experiences — but always keep in mind that every experience is unique.
It’s not your fault
It’s common for parents to blame themselves for their baby’s condition or wonder whether they should have done something differently during the pregnancy to prevent the outcome. It doesn’t help to think this way. The fact is, many birth defects happen for reasons that are outside of a parent’s control. Try not to blame yourself for something that you did not cause. The very best thing you can do for yourself and your baby is to focus on self-care throughout the rest of your pregnancy. Remember to get enough sleep at night. Keep hydrated and make sure to eat nutritious food throughout the day.
It’s OK to ask for help
It’s normal to feel sad, but be alert for signs of depression or anxiety that may impact your ability to effectively cope with day-to-day life. If you have stopped taking care of yourself, if you are sleeping too much or too little, or if your eating habits have changed, it is vital that you reach out to a mental health professional right away.
Look for a specialized maternal-fetal treatment center with dedicated social workers, clinical psychologists and/or psychiatrists who focus on providing emotional support and perinatal counseling for families expecting babies with prenatally diagnosed birth defects. Speak with your medical provider about mental health resources in your community. Other support services available to you may also include spiritual care or parenting support groups. (Find more information about seeking mental health treatment.)
It’s normal to grieve
Learning that your baby will require hospitalization or multiple medical interventions after birth represents a loss of the life you imagined having with your new child. Allow yourself time to grieve. With time, allow yourself to envision a new kind of life with your baby, even if it might look different than the one you had originally planned. You don’t need to let the diagnosis identify or limit your child. Children with chronic medical conditions can still lead joyful and fulfilling lives.
Find a care team you can trust
An important first step after you learn about your baby’s diagnosis is to find a supportive medical team experienced with treating birth defects that will work closely with you to meet your needs.
In addition to expert physicians, advanced practice providers and nurses, you should look for a maternal-fetal treatment center that provides extensive psychosocial support services. Perinatal psychologists, psychiatrists, child life specialists, chaplains, and social workers play a critical role in supporting families as they navigate this difficult time. They can work closely with you to address any social, familial, spiritual or psychological challenges that may arise during your pregnancy, birth, and throughout the postpartum period.
Take care of yourself first
The very best thing you can do for your baby is to take good care of yourself. Eating right, getting enough sleep and finding ways to reduce stress are essential for your health and the health of your baby. Find resources to help you take care of yourself, including guided relaxation exercises.
Get tips for how to talk with others about your baby’s diagnosis
Some parents fear having to break the news of their baby’s diagnosis to other people in their lives. A social worker can give you strategies tailored to your specific concerns about opening up to extended family, friends, co-workers and others if you choose to do so.
It’s natural to want to shield your other children from news of the baby’s diagnosis. But children tend to know when their parents are upset and often overhear adult conversations at home. Their imagination may take over if they don’t know what’s wrong, and they may worry that something terrible is going to happen to them or to their family. They may also worry that their thoughts or behaviors may have caused the baby’s birth defect.
Talking with your children in an age-appropriate way will put their fears to rest and reassure them that you still love them and that they didn’t do anything wrong. You may have access to child life specialists at your hospital that can help you with this conversation, offer tips for speaking with your child’s school or day care providers, and work directly with your children to help prepare them for the birth and hospitalization of their new sibling.
Child life specialists can also help families stay connected if they need to relocate prior to the baby’s birth. They can help siblings cope with the hospitalization by normalizing the hospital environment as well as providing activities for the exploration of feelings and engaging in medical play.
Make a plan
If you feel anxious about the future, try your best to bring yourself back to the present moment. Focus on the here and now. And remember, parenthood inherently requires that we face the unknown — whether our babies are born healthy or not.
Making a plan can help you take charge of the things that are under your control. Look for an expert maternal-fetal treatment center that will support you in sorting out all of the details and connect you with resources that can help you and your family.
If you or someone you know has learned their unborn baby has a birth defect or will have medical challenges after they’re born, there is help available. Contact Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment (CFDTT) for an evaluation and to learn about treatment options available for your child.
Read more about the CFDT's Psychosocial Support Team.