If you have received unexpected news about the development of your baby, firstly, know that you are not alone. One in twenty-two women and their partners will find out that their baby has a major congenital anomaly.
Congenital refers to something that is there before or at birth, and anomaly means ‘a difference’. An unborn baby may be diagnosed with a congenital anomaly when there is something unexpected about their development, health or genetics.
Prenatal screening, which includes blood tests and ultrasounds may show that a baby has a high chance of being born with a congenital anomaly. When there is a high chance found on screening, parents are offered further tests which may lead to a diagnosis.
When the sonographer went quiet, I just knew something was wrong. She said she saw something but she couldn’t tell us much then, so I had wait to see a specialist. That waiting was so hard.
An anomaly may be minor or major. Anomalies that are considered to be major are those that may require significant medical intervention, may be life-limiting and anomalies that may lead to disability.
One in 22 babies are diagnosed with a major congenital anomaly.
I felt like I was alone. I didn’t know how common this was until I started talking to people and they would tell me about what they went through too.
The experience of being told of a suspected or diagnosed congenital anomaly is different for each person, however there are some common moments that parents move through.
For many parents, prenatal screening can feel like just a routine appointment. Ultrasounds are often viewed as a chance to see and bond with their growing baby. This means that parents are often unprepared and feel shocked when given unexpected news.
I felt blindsided. I was in shock. I didn’t have anyone with me, I just didn’t expect this would happen to me.
After the initial shock, expectant parents commonly describe experiencing a roller coaster of emotions and thoughts. Other experiences can include:
It may sound silly, but I wanted to avoid everyone, I hated seeing happy people. It made me angry and then so sad.
For some parents, the intensity of emotions eases quickly and they find a place of hope and acceptance. Other parents may experience these symptoms for the rest of their pregnancy or into the postnatal period.
There is no single way to cope with unexpected ultrasound results. Parents are individuals with their own stories, histories and values. While there are common experiences, how each person moves through their journey is unique. Therefore, not all coping strategies will help all parents.
Parents who have moved through the experience of receiving a prenatal diagnosis have often describe these strategies are helpful.
Most expectant parent find it helpful to learn what they can about their baby’s anomaly. The information helps parents feel like they are more in control and prepared. However, some parents avoid the internet due to concerns whether the information is correct. Rather, they prefer to rely on the information offered by their health care team. If you do wish to look for information, it may be helpful to stick to websites of organisations you can trust or ask your care team for guidance to reliable information.
They said not to Google, but of course I did. Some of the things I found were really scary but I felt like that helped me be ready for anything.
Family and friends can be very helpful for some parents who feel they can talk openly and who appreciate the distraction that their loved ones provide.
Other parents prefer not to share the unexpected news with their families or friends until they feel ready or until they have more information to answer questions that their families may ask.
Talking with a counsellor or other professional may be helpful for all parents and especially important for those who do not feel ready to share the news with family.
I didn’t want to tell anyone because I didn’t know what to say, but when I finally started talking it was a relief. I probably should have talked to someone earlier.
Reaching out to other expectant parents who have also experienced receiving unexpected ultrasound results, or going through a complicated pregnancy, is often described as helpful.
Connecting with condition-specific support groups can provide a way to gain a greater understanding of the lives of people with a particular condition. It may be helpful to remember that due to the nature of support groups, they often attract people at times when support is needed. Therefore, they may also show some of the more challenging sides of life with a condition.
I found a group on Facebook and really, that was so good. You know, it was good to see kids with the condition, to see what life was like, the good and bad. Not just what the doctors were saying.
Being active in the planning and decision making can help women regain some control and autonomy. Planning may include decisions about what tests to undertake or to make plans for the birth.
Prayer and connection with their religion or spirituality has helped some couples move through the period of prenatal diagnosis. Women report feeling comforted by the thought that God wouldn’t have presented a situation that they couldn’t get through.
I thought God was punishing me, but then I started to think how God had chosen me because he knew that I would do anything for my baby.
The diagnosis of a congenital anomaly often means that parents are presented with options that they might not have considered earlier, to continue or end their wanted pregnancy. The decision making time, to continue or end a wanted pregnancy has been described by some women as the hardest stage of the prenatal diagnosis. For other women, the decision is straightforward.
You have life or death in your hands, like playing God. It was the hardest time of my life. Harder than my Dad dying, because you feel responsible, you are forced to make the decision.
The option to end a wanted pregnancy will depend on the anomaly, the stage of pregnancy, and the law. Parents who have made the heartbreaking decision to end their wanted pregnancy often do so to avoid their baby experiencing any suffering, or due to their personal and family needs.
I had so many thoughts, and really strange things. Like, what would I do with all the baby things, but then I felt guilty that I would even think of such material things when there were bigger things to think about.
For parents who continue their pregnancy there are several options available after birth. Many parents will plan to care for their newest family member. Some parents may consider adoption or foster care. Perinatal palliative care teams may be available to support families when birth may also bring the time to say to goodbye to their baby with a life-limiting condition.
The decision that you make is deeply personal, you will make the right decision for your baby and family. While no one can make this decision for you, non-directive pregnancy support counselling is available to help you explore your options and help you come to your own decision.
Find out more about seeking professional help and advice for family and friends. You can also find services and supports when coping with news of a congenital anomaly on the COPE Directory.
Pregnancy support counselling with a qualified health professional may help you address personal concerns about a current or recent pregnancy (within the past 12 months).
There are some things you can do to feel supported and that can be of help following the news of a congenital anomaly.
When a family member or friend has received unexpected news of a congenital anomaly it may be hard to know what to say.
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