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Before the birth - prenatal diagnosis

My child has a HEART DEFECT – What happens now?

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Hearing those words is a blow to the heart for all expecting parents. Suddenly there are thousands of questions, many uncertainties accompanied by anxiety and the inescapable question of why. However, despite constant advances in prenatal testing and screening, not all congenital heart defects can be detected before the baby is born. Specialists use state-of-the-art equipment to make the most accurate and reliable diagnosis possible. But some anomalies are just too difficult to spot, even for the most experienced eye. This means that there always remains a slight uncertainty until after birth, when more detailed cardiological tests can be performed to determine whether your child requires treatment and what form that may take.

Die vorgeburtlichen Untersuchungen dienen KEINESFALLS dazu, eine Auswahl zu treffen, um nur gesunden Babys das Leben zu schenken. Denn vielen Kindern mit Herzfehlern kann gegebenenfalls durch eine oder mehrere Operationen und/oder andere Behandlungen eine gute Lebensqualität ermöglicht werden. Es gibt jedoch Herzfehler, die so schwerwiegend sind oder in Kombination mit anderen Erkrankungen auftreten, dass das Kind wahrscheinlich nicht lebensfähig sein wird. In dieser schwierigen Situation stellt sich die Frage, das Kind auszutragen oder die Schwangerschaft abzubrechen.

If you have to make the difficult decision whether to continue or terminate the pregnancy, consult your doctor but also seek information and support from other health professionals.

You have the right to ask for a second opinion and access support!

We also encourage you to speak to a psychologist. It is important to get professional and factual advice before making a decision. It is also important that you do not feel pressured in any way. This is your choice.

We offer support and services in all Austrian states and are here to help you with any non-medical concerns. We understand what it is like to be in this situation and can offer advice on what it means to have a child with CHD.

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We will always remain impartial and will never influence your decision.

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What we can do is support you in making a decision that is best for you and be there for you throughout the process.

Knowing you are not alone in this can help lift some of the weight. Speaking to others who have gone through or are going through the same can provide a safe space to share your experiences, thoughts and feelings. Contact us if you want to be put in touch with other heart families. You can also find further information in our information pack on prenatal diagnosis.

Take our hand and take heart.

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  • This is an important decision - take your time
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  • Make sure you get all the information you need.
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  • Do not let anyone pressure or hurry you.
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  • Reach out for support. This is a very difficult decision and you have to make sure that it is the best decision for you and your life.
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  • What hospital has the best facilities to deliver the baby and provide urgent treatment/surgery if needed? It is best if all the child’s needs can be looked after in the same hospital, especially if the child has a more complex heart defect.
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  • Who can look after your other children during this time?
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  • What support is available?

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Prenatal heart surgery

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Thanks to significant advances in paediatric cardiology and paediatric surgery in recent years, there are now many highly effective treatment options for congenital heart defects. Newborns can receive essential and life-saving medication and surgery immediately after birth. Some specialists go even further and already treat babies with congenital heart defects in the womb.

New possibilities and the availability of prenatal treatment can offer a glimmer of hope in cases where the prognosis is poor.

More information on prenatal treatment:

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Sometimes, small anomalies can develop into severe congenital heart defects. The initial mild condition can lead to further complications affecting the heart, vessels, or lungs as the foetus grows and develops in the womb. Such developments determine the postnatal prognosis and recommended treatment options.

A significantly narrowed or blocked valve can restrict the blood flow and blood pressure. As a result, the heart cannot grow and form correctly, causing one of the ventricles (heart chambers) to be underdeveloped or – in the worst case – leading to heart failure. Often, serious conditions only present themselves after birth as the baby’s blood flow changes from foetal to neonatal circulation. If one of the ventricles is already too severely damaged and normal biventricular circulation (with two functioning heart chambers) cannot be maintained or restored, the only option is univentricular palliative surgery.

In order to prevent the condition from reaching such a critical stage, prenatal heart surgery and interventions are needed. Increased efforts over the last decade have led to the development of very small endoscopes, cannulas and advanced imaging methods. All of this helps to increase and improve options for prenatal treatments.

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Treating heart conditions in the womb gives doctors the chance to correct any defects as soon as possible in order to prevent or minimise further complications and to encourage the heart and vessels to develop normally. Prenatal interventions can be very successful because the foetus has the ability to form new heart muscle cells, which allows the underdeveloped ventricles to recover.

The main aim is to prevent the baby from being born with only one functioning ventricle and to ensure that normal biventricular circulation can be maintained. Research has shown that children with only one ventricle suffer from more serious conditions in the long-term.

Prenatal heart treatment can significantly increase the chances for postnatal heart surgery to be successful.

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