New Diagnoses

COARCTATION FOR NEWLY DIAGNOSED

Coarctation is considered to be a moderate heart defect. It is a very fixable heart defect and with good monitoring, patients have a good chance of living a normal life. However, it is very important to be an informed patient/parent and make good decisions regarding where and what care you receive. Time needs to be put into surgical options as there are different approaches and levels of skill.

Diagnosis for coarctation can be challenging. It’s diagnosed often by ultrasound. However, some physicians do not have adequate training to identify subtle differences in ventricle or valve size that could indicate a heart defect. Further, positioning of the fetus or aorta and difficulty in general of viewing the aorta can impact the quality of images.

Physicians working with patients prenatally may over or under estimate the likelihood of coarctation. While the potential of coarctation in a baby or adult is shocking, use the time you have to prepare for a potential surgery. This means delivering at or near the children’s hospital where surgery will occur. It also means choosing a hospital that does a significant number of coarctation repairs (on either children or adults) with good results each year. For adults and re-coarctations, determine the best place and options for catheter-based repairs. Understand the surgical options if there are additional conditions such as hypoplastic arch or a large VSD or ASD. Understand what questions to ask regarding the after-care – are the nurses trained cardiac nurses, is there a dedicated cardiac critical care unit and does it have just congential patients or all heart patients, etc.

In the United States, there are over 100 institutions that repair COA mostly at children’s hospitals and/or adult hospitals that might not have sufficient expertise in congenital heart defects. Sometimes these hospitals are very small and rely heavily on congenital heart surgeries for prestige and revenue. Smaller congenital heart programs may puff up claims regarding their care and outcomes. There is no independent body that ensures statistics on COA repairs and outcomes are properly reported. In addition, physicians can feel conflicted to tell a patient to go to a hospital they are not affiliated with.

Generally, parents and patients should look for the regional center of excellence in their area. There several dozen excellent centers scattered throughout the country. This is particularly important if there is ascending arch stenosis or hypoplastic arch. Hypoplastic arch occurs in up to 1/3 of newborns. Also, there are several different repairs used for hypoplastic arch that can vary based on the preference of the surgeon. Some involve open-heart surgery, while others do not.

We suggest that you join our Facebook Group, where you will find additional resources and support.

Click here to visit the Coarctation of the Aorta Facebook Group in a new window.