Founders and Advisory Board

Anna Jaworski's FAQ for Radio Interviews

by 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!

Sincerely,

Anna Jaworski

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 website -- 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
3910 Sierra Blanca
Temple, TX 76502

* 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

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:

1. I spoke to at my niece's school when they were doing Jump Rope for Heart last February. Both of my sons came with me and even answered the children's questions. Alex even raised his shirt and showed the children his scar. (click here BHP in the News to read the newspaper article written about this event)

   *** Offer to speak at your local elementary school during Heart Month (February) or during another appropriate time. You could offer to speak to your child's class (or a sibling's class) when your child is in the hospital. You could even read a book about the heart or come up with a game show type of activity where the children have to answer questions about the heart. ***

2. I talked to someone at church who ran the NPR station in our town about my son's condition and that I had written a book about his heart defect. He invited me to be on one of his radio shows! It was a great way to talk about some CHD issues.

   *** Issues involving Congenital Heart Defects are newsworthy! If you are doing something in your community to raise CHD awareness, your local radio station may be willing to do a story on it! Your community may be interested in knowing your story -- contact your local newspaper's Human Interest editor. Click here to see some stories that have been written about my family: BHP in the News ***

3. I wrote to my governor and the President and First Lady of the United States and requested they declare February 14th CHD Awareness Day.

   *** Write to your governor, mayor, the President (if a U.S. citizen) or any other dignitary who will help us spread the news about congenital heart defects. You can look up your governor's contact information on the Internet by doing a Search on Yahoo!, Google or any of the other search engines. Here's a link for contacting people at the White House: Contacting the White House ***

4. While living in Florida, I contacted our local Children's Medical Services Department and arranged for a special CHD Day celebration.

   *** There are many organizations conducting CHD Day Celebrations, usually during the month of February, that need your help! Or you can arrange your own celebration. Places to consider contacting: state organizations designed to help children with critical or chronic illnesses; local hospitals -- especially if your child received treatment there or if they perform open-heart surgery on children; Children's Miracle Network; Ronald McDonald Houses; CHD Support Groups; organizations or businesses which provide additional services to the CHD Community, such as Easter Seals or other organizations which help children with developmental issues; and Early Childhood Intervention Programs (ECI programs). ***

5. When I decided to join Toastmasters, I knew I would have to give speeches. A number of the speeches I gave dealt with congenital heart defects. This helped spread awareness of CHDs to a new group of people. I also gave a speech at my church's adult education session in February and spoke about the need for organ donation by explaining my family's situation and how I became aware of the desperate need for children's hearts. I was able to relate stories of friends I knew whose children had received heart transplants.

   *** What organization do you belong to which might welcome a speech or program related to congenital heart defects? There are more opportunities to talk about health issues today than ever before. By revealing your own story, you have the opportunity to inspire and educate others. ***

6. When my son's heart defect was identified, there were no local support groups and because we lived four hours from the hospital which treated my son, I was unable to receive support from our treatment hospital. Therefore, Jane Hunt (a fellow heart mom) and I helped start Milagros -- a hospital-based support group for members of the CHD community in central Texas. I was asked to be the first guest speaker and shared my son's story. I also wrote a poem about what it meant to be the parent of a child with a congenital heart defect especially for that first meeting. (To read this poem, click here: What it means to be the parent of a heart child )

   *** Find out if there is a support group near you. By working with a local support group, there is much that you all can do to raise CHD Awareness. Some support groups sponsor picnics, have fund raising drives, parties and many other activities in order to raise awareness and/or funds for CHD research. ***

7. I have had the opportunity to speak at some parenting conferences -- some specific to CHDs (click here to see the conferences where I have spoken: Events Calendar ) and some just specific to parenting. I have spoken about the need to share our stories and how writing can be empowering; about how we all share common bonds and even about the development of pediatric cardiology as a field and how that personally affected a number of individuals and helped pave the path for radical, new surgeries and successes. At the Parent-to-Parent 2000 International Conference, I was part of the Meet the Author session and had a chance to talk to others about CHDs. I also had a chance, at the end of the conference, to fill out a form letting the organizers of the conference know that they had neglected to have any workshops or speakers discussing CHDs, even though many of the children the conference was designed for had CHDs. I met a lot of other heart parents at the conference and all of us filled out our forms letting the organizers know of our need for more workshops and speakers devoted to issues related to CHDs.

   *** Are there parenting or other related conferences you attend which could have workshops on issues of importance to the CHD community? Could you offer to give a workshop or share your expertise? Could you put together a panel of experts to answer questions people at the conference might have? Don't be afraid to think outside the box! There are a number of organizations, such as La Leche League, which may not seem geared toward CHDs, but which would welcome a heart mother's experiences and advice when dealing with Failure To Thrive infants. What other organizations are out there that might benefit from your advice and experiences? ***