The moment a parent discovers their child is suffering from a congenital heart defect (CHD), a mixture of emotions surface: fear, anxiety, anger, and sadness. Once the initial shock has passed there is usually an urge to research the condition and to educate oneself. Knowing that other people are in the same situation is a comfort. If they can get through it, you can too.
When expecting a baby, prenatal tests are conducted and many parents see it as a fun experience because they get the chance to ‘see’ their child and to find out the sex. The real purpose of prenatal echocardiograms is to scan the foetus for abnormalities. Unfortunately, in many cases where children are born with CHD, the prenatal scans do not pick up the anomaly. Despite the improvement in scanning technology, not all CHDs are detectable prior to the birth. Prenatal scans only allow for physical tests as opposed to functional ones. This means that a full diagnosis will have to wait until the baby is born. Not knowing what exactly is wrong with the child may lead to parents being unable to fully educate themselves on how to help their child. The relationship between the child’s doctor and parents is an important one. There must be trust in order for the parents to positively communicate with the doctor and feel satisfied with their child’s care.
Coping With the News
Accepting that your child is ill is not an easy thing to do. Many parents are traumatized because a sick child means a rocky pregnancy. Common symptoms that parents have upon learning about their child’s diagnosis are feelings of guilt, depression and helplessness. These can result in panic, social isolation, eating and sleeping disorders, and the disregard of chores. All these feelings are understandable and it is important that parents give themselves the time to experience them, but feelings of guilt should be put aside, as there are many causes that lead to CHD. There is not much a pregnant woman can do about it, especially if she has no knowledge of the family’s health history.
Accepting your situation is important because, especially for the mother because feelings will affect the pregnancy. Talking about feelings is key. Seeking solace in a friend, relative or even a therapist could help to overcome feelings of isolation or loneliness.
As a parent, you must put aside your anxieties and decide on your next move quickly. This requires you to have a good understanding of your child’s situation and of the repercussions of this situation for both yourself and your child. A foetal cardiologist should conduct a detailed sonograph to show the arteries and the cardiac chambers in order for the diagnosis to be confirmed. Any decisions the parents make should take both the mother and child into consideration in terms of long-term consequences. Any advice given by specialists should help in the process of making the decision. Any choice made should be backed up by facts, while you are fully informed and knowledgeable. Asking questions, even multiple times, is key, and having various counseling sessions may help to better understand the situation.
Regardless of the decision made, the outcome may never be completely reassuring. Having said that, all choices regarding your child are up to you and every case is different. There is right or wrong path to take, only the path that is best for you. The consequences of the decisions made may have an emotional effect on parents, so using those emotions to make choices should be done carefully.
Preparing For Life with CHD
The news that your child has a heart defect may put a burden on your pregnancy, but in today’s world such a diagnosis is not a death sentence. More than 90% of children born with a CHD live to see adulthood. A prenatal diagnosis should allow you to prepare yourself for the birth of your child. More often than not, parents are confronted with a lot of decisions to make and even though it may be hard to focus under the circumstances, these choices will help both the parents and child in the future.
Getting in touch with local organisation may greatly help to alleviate the stress you are feeling. It will give you the chance to meet and speak to people in your same situation. Beating Hearts Malta is once such organisation that offers support to both those suffering from a CHD and their families.