Site updated Thursday, June 09, 2005
Anna Jaworski's FAQ for Radio Interviewsby Anna Marie Jaworski * Copyright © 2003
Dear Friends of the Heart,
Many of us are working on gaining awareness of congenital heart defects. During the month of February this is a little bit easier because radio stations and magazines/newspapers are looking for heart-related stories. I shared an FAQ I devised for an upcoming radio interview with friends in a heart support group I belong to and it was requested I post this on my website.
Please feel free to use this FAQ as a template for yourself in your attempts to gain publicity about congenital heart defects. You may take the questions I've asked and write your own answers to personalize your own FAQ. I wish you all the best of luck!
Frequently Asked Questions about Congenital Heart Defects for Media Interviews
Q: What is A Day for Hearts: Congenital Heart Defect Awareness Day?
A: This is a day to honor and remember all people born with a heart defect and all of the families and friends touched by our heroic "heart" children. There are about 1 million people alive in the United States alone who were born with a heart defect. It is also a time to recognize the many medical professionals who take care of our heart children day in and day out and who conduct research which we hope will cure or prevent heart defects in the future.
Q: Why are you involved?
A: I am the mother of a child with a congenital heart defect (CHD). My son has had two open-heart operations. I never knew heart defects were the #1 birth defect until my son was diagnosed with his heart defect. I have written some books to help parents because I couldn't find anything to help me when my son was hospitalized. Ever since Alex's heart defect was identified, it has been important to me to be an advocate for him and to provide support and information to the rest of the CHD community -- which is composed of over 1 million people, according to the American Heart Association.
Q: What do you want the public to know about congenital heart defects?
A: There are several things I'd like the public to know. First of all, CHDs are the #1 birth defect. It affects about 1% of newborns -- over 40,000 babies are born with heart defects in the United States every year. Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect -- of those, 87 will be born with a congenital heart defect -- that's more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)
We must raise awareness of the need for funding for CHD research. For every dollar provided by the National Institute of Health (NIH), only one penny is provided for pediatric research. Only a portion of that penny goes to support research on CHDs, the most common birth defect (according to the Children's Heart Foundation).
We also need to raise awareness of the need for organ and blood donations. Only about 30% of the children who need a heart transplant receive one in time . About 40,000 units of blood are used everyday, yet only about 5% of the adults, who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States -- that someone is often one of our heart children.
Lastly, I'd like people to know that there is support for the families dealing with CHDs. It's so easy to feel confused and alone, but with the huge network of caring individuals that form the CHD community, that's no longer necessary. We parents, children and extended family members can (and do) reach out to one another and help each other on the journey we must all make when living with CHDs.
Q: What causes congenital heart defects?
A: Unfortunately, scientists do not know all of the causes for congenital (present at birth) heart defects. A lot of people think that mothers or fathers must have done something wrong to cause their children's hearts to be malformed. That is seldom the case. There are some known illnesses, medical conditions and drugs which can increase the risk of having a child with a heart defect, but most of the time, the doctors don't know why our children are born with heart defects.
Q: Do you know why your son has a heart defect?
A: No, we do not. I was very careful during my pregnancy. I don't drink alcohol or smoke and I even avoided caffeine while pregnant. Nobody in my husband's or my family has a heart defect, so this was quite a surprise for us.
Q: You said your son had two open-heart surgeries. What's wrong with his heart?
A: People often ask me if Alex has a hole in his heart. These "holes" are usually called ASDs or VSDs and are the most common kinds of heart defects. My son had both types of holes in his heart. He also had a very small left ventricle -- which is responsible for pumping blood to his whole body. Alex has hypoplastic left heart syndrome -- the leading cause of death among newborns for cardiac reasons. His heart was too weak to pump blood to his lungs and his body; therefore, a surgeon reconfigured his heart so it doesn't have to work so hard.
Q: Does that mean that Alex has a lot of restrictions on what he can do physically?
A: You might think that, but no. Alex is able to do just about what any 8-year-old child can do. He is a Red Belt in Tae Kwon Do, swims, plays on the playground and wrestles with his brother. When he gets older, he will have some restrictions -- he won't be able to go into high altitudes, so rock climbing, snow skiing or mountain climbing are out for him. I don't anticipate this being much of a problem, though, because our family doesn't take part in those activities anyway. Alex also really shouldn't play basketball, football or soccer -- not because he can't do those sports, but because the older he gets, the more likely he is to push his body farther than he should due to peer pressure.
Q: You said Alex wrestles with his brother. How has Alex's heart defect affected him?
A: That's a good question. Most people don't think about how having a child with a heart defect will affect the siblings. Joey was 3 years old when Alex's heart defects were diagnosed. After spending the night in the hospital, Alex and I were whisked away to a hospital 3 hours away and I didn't get a chance to say good-bye to Joey. When we came home from the first surgery, Joey was especially clingy and he had nightmares. We all handled the second surgery better, but we had time to prepare for that one. Now that we are 7 years past the last surgery, Joey hardly thinks about Alex's heart defect except to remind him to take his daily medications.
Q: You said that Alex's heart defect wasn't diagnosed until he was 2 months old? Can't heart defects be discovered during routine ultrasounds?
A: Some women do find out in utero that their baby has a heart defect, but many women, like me, have several ultrasounds during pregnancy without the heart defect being detected. Many heart defects are not diagnosed until after birth and sometimes not for years, if at all!
Q: How did you discover there was a problem?
A: My husband, a nurse, knew there was a problem the minute Alex was born, but he was told it was "newborn breathing." He was told this for Alex's first 8 weeks of life. I knew something was wrong because of the difficulty Alex had with nursing. He kept falling asleep on me and wouldn't wake up crying to eat like Joey had. The specialists we saw told us not to compare our children; Alex was just a sleepy head. Frank and I were made to feel like we were overprotective parents. It wasn't until Alex's second well-baby checkup that he was admitted for Failure to Thrive -- and that's when they discovered he had a severe congenital heart defect.
Q: How has this affected your marriage?
A: Anytime you have a special child, it puts stress on a marriage. My husband and I prayed together and worked hard to be a cohesive unit, even when we were under the most stress. We felt it was vitally important for both of us to be there for the boys as much as possible. Now we are 7 years past Alex's surgeries and I'd say our marriage is stronger than ever. Having a child like Alex makes us cherish each and every day. We know that we never know what will happen tomorrow and we try to make the most out of each and every day we have together.
Q: How can people get your books and resources?
A: The best way to get books and resources from Baby Hearts Press is at our
Baby Hearts Press
, but you can also get them from calling
toll-free 888-222-4649 or sending a check or postal money order to:
Baby Hearts Press
* Anna Marie Jaworski is the author of two books: Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation and the editor of The Heart of a Mother. She is currently working on several books. For more information about Anna or her books, go to Baby Hearts Press
CHD Awareness - Seven Ways You Can Help Raise Itby Anna Marie Jaworski Copyright © 2002
Although congenital heart defects (CHDs) are the #1 birth defect, most people are not aware of this fact. It isn't until our own child or someone we love becomes affected that most of us learn this startling fact. Now that you are part of a special community -- the CHD community -- please take some time to raise CHD awareness in your community. Below you will find 7 different things I have done to raise awareness:
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If you believe you, your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.