The news comes as a shock. During your routine 20-week pregnancy ultrasound, your physician notices a potential abnormality with your baby’s heart. It might be nothing to worry about, but you definitely want to get it checked. This is where the Fetal Heart Program at Primary Children’s Hospital enters, starting with a fetal echocardiogram, where a certified cardiac sonographer gets a detailed look at the structure of your baby’s heart.
The Heart Center performs around 700 fetal echocardiograms each year, providing detailed and highly accurate diagnoses. If you receive the diagnosis that your child has a congenital heart defect or a rhythm abnormality:
- Know that you are not alone. Approximately 1 of every 125 babies is born with a heart defect, the majority of whom, with proper treatment, grow up to lead productive, happy lives.
- Find some peace in the fact that the abnormality was discovered early. The earlier a defect is diagnosed, the better prepared the Heart Center will be to have the right people in place to treat the problem.
- Rest assured that you are in capable hands. The Fetal Heart Team is composed of four fetal cardiologists, five cardiac sonographers, a cardiology social worker, and a fetal heart nurse coordinator. The team provides patients with expert evaluation, access to cutting-edge treatments, a myriad of support services, and, if necessary, access to the Heart Center’s highly skilled pediatric cardiothoracic surgeons.
Following the diagnosis, you will sit down with the team to go over the fetal echocardiogram. Together, we will discuss the anatomy of your child’s heart, so that you understand the specific defect or abnormality. During this meeting and follow-up visits, we will walk you through what to expect during the remainder of your pregnancy and after the baby is born. The team will go over potential treatment options and make sure that you are connected to all the right physicians and technology to receive the best care possible. Survival of the newborn is, of course, the primary consideration, but the overall objective is to help your child lead a long and healthy life.
Your primary point of contact will be the fetal heart nurse coordinator, who will provide you with educational and practical resources you may need. The nurse coordinator will also be your communication liaison with the medical specialists, assisting you with connecting to the right doctors and services, including cardiovascular surgery, perinatology, neonatology, and genetics. She is available to answer your questions and to help you through the process.
The cardiology social worker can help you navigate through financial and insurance issues and can assist you with lodging resources if you need to travel to the Heart Center. Our social worker will connect you to support groups, where you’ll be able to share information with other parents going through a similar situation. She can talk with you about strategies on how to discuss the issue with your other children and family members. One thing is certain: emotional support is available every step of the way.
In time, the initial shock you feel at the diagnosis will eventually subside and in its place will form a determination to make the best of a difficult situation. You will also be able to take comfort in the fact that you have the expertise, resources, and full support of one of the country’s best fetal heart programs.
