Frequently Asked Questions
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Not knowing where to turn when you hear the term Congenital Heart Defect (CHD) is the most common reaction for parents. What does that term even mean? What do I do next? We’ve answered the most common questions about CHD for you.
What are Congenital Heart Defects (CHDs)?
CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart). About 1 in 4 babies born with a heart defect has a critical CHD (also known as critical congenital heart disease). Babies with a critical CHD need surgery or other procedures in the first year of life. (Source: CDC)
How is a CHD diagnosed?
Many CHDs are diagnosed prenatally, typically at a 20-week anatomy scan (also referred to as a level 2 ultrasound). There are also some CHDs that can go undetected prior to birth. One of the tests now performed on all babies in PA as part of the standard newborn screening is the pulse-oximetry test. A pulse oximetry test is a simple, non-invasive test where a small probe resembling a band aid is placed on the infants toe, and then measures oxygen saturation in the blood. A lower oxygen saturation is typical in critical CHDs (where immediate intervention may be necessary), and this early detection can be crucial in ensuring the child receives necessary cardiac care.
What will the impact of a CHD be on my child and family?
Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping. (Source:American Heart Association)
I have been told my child may have a CHD…now what?
A recommendation by most parents of children with a heart defect, and practitioners, is to seek a second opinion with a pediatric cardiologist. Thankfully, here in Pennsylvania there are several pediatric cardiac centers available. Your obstetrician or perinatologist can assist you in obtaining a referral or making an appointment. Additionally, you will find links within our site to the cardiac centers our families have had most experiences with.
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