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Mended Little HeartGuide

About My Child’s Heart Table of Introduction Contents SECTION Frequently Asked Prenatal Questions Important: The questions and answers below address some common concerns that parents and caregivers have about the birth of a child with CHD, but always turn to your medical team for questions about medical issues. Q: I feel like I did something to cause my baby’s CHD. What did I do wrong? A: Some congenital heart defects may be linked to genetic or environmental factors, and certain things that mothers do or are exposed to may increase the likelihood of having a baby with CHD, but that doesn’t mean you did anything to cause your child’s heart condition. Most cases of CHD have no known cause, so no one can say that anything you did or did not do caused your child’s heart problem. Let go of the guilt. Q: I am having trouble bonding with my unborn baby. Is this normal? A: It is not at all uncommon. When parents hear that their baby has CHD, they may distance themselves from the child in an attempt to protect themselves from the unknown. Some parents feel that they would not be able to bear it if they bonded too much with the baby and then he or she did not survive. The truth is, there is nothing you can do to mentally or emotionally prepare for the loss of a child. There are, however, some things you can do to help you start bonding with your baby. Learn his or her gender, start a journal about your baby, write letters to your son or daughter, pick out a name and use it when thinking of or referring to your child. If you are still struggling, your obstetrician can recommend someone for you to talk to about your feelings. Q: Even after it was explained, I don’t understand my baby’s heart defect. What can I do? A: Ask your cardiologist or surgeon to explain it again, draw a picture or have someone else explain it to you in another way. If you want to understand the heart defect, your medical staff will go out of their way to help you. Don’t be afraid to ask. Sometimes people who deal with hearts all day, every day, forget that most of us don’t understand medical jargon. Keep asking until you get the information you want and need. Also, ask them to refer you to reliable online or printed information that will help you learn more. Q: My doctor called my baby’s heart defect “rare.” Does that mean there is no hope? A: Even though congenital heart defects are the most common form of birth defect in the U.S. — affecting about 1 in every 110 babies — there are 35 commonly recognized types of congenital heart defects and variations on many of them. Because of this, nearly every type of heart defect can be classified as “rare.” The good news is there is treatment and/or surgery available for most types of CHD. Talk to your baby’s cardiologist or heart surgeon before giving up hope. Get a second opinion to be sure you have as much information as possible. (Also refer to the Making Health Care Choices section of this Mended Little HeartGuide.) Go To 46


Mended Little HeartGuide
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