Friday, March 29, 2013

March Book Reviews

Greetings, Heart Friends!

Today's blog is the first in a series of monthly book reviews of books of interest to the Congenital Heart Defect community.  I will review 3 children's books.

It's not common for a book to get only 5-star reviews on but the first book I will review has done just that!

Sabrina: The Girl with a Hole in her Heart by Wendy Lewis is a touching story about an amazing organization called "Save A Child's Heart" (SACH).  This Israeli-based organization has gathered surgeons, nurses and other specialists from around the world to treat children with congenital heart defects in places where there are no hospitals to treat such children.

As the mother of a child who was born with a heart defect, I cannot imagine living in a country where my child would have to be flown somewhere far away from me for treatment. This story chronicles Sabrina's journey to have an atrial septal defect repaired and how SACH saved her life.

I especially liked how the book included drawings that children will enjoy as well as illustrations of actual echocardiograms and photographs of equipment that is used in surgery. Everything was discussed in a matter-of-fact manner that made it less threatening and frightening for children to read (or have read to them).

I highly recommend this book to any families of children dealing with congenital heart defects. The book will give all children an appreciation for the care they have received and the care that loving professionals are willing to provide because of their passion to help children in the heart community.

For more information, you can visit:

The second children's book I am reviewing today is called The Gift of the LadyBug by Carole M. Amber. Like Sabrina: The Girl with a Hole in her Heart, The Gift of the LadyBug is a 5-star book on

This book is a gently written tale of a "child" (a ladybug) who is special and faces a life-threatening illness. The illustrations are beautiful and the story captures the beauty of the philosophy that we must make each and every day count and that life is fleeting.  I love how the parents are able to rejoice in the uniqueness of their child and how they were able to change their lifestyle to accommodate all their child had to teach them before he left/passed away.

I believe the lessons in the book could be cherished by any family, but especially by CHD families. I highly recommend the book.

For more information, you can visit:

The last book I will review today is a book that by now is a classic in the CHD community.  Matty's Heart and Matty's Heart Cath coloring book is a set of books by Jean Clabough, R.N. that have been a mainstay in many CHD libraries the world over.

This set is exclusively available from Kids with Heart (  What makes Matty's Heart books special is that they were among the first books ever written to help children really understand the procedures they might have to face if born with a severe, congenital heart defect.  Matty was born with transposition of the great vessels and thus he required open-heart surgery to survive. The book was written in 1995 and it showed children what they could expect during their hospitalization.

This book would also be appropriate for siblings or friends of children who will be undergoing open-heart surgery to help them understand what the hospitalized child is going to go through.  One of my favorite parts of the book is how it lovingly shows the mother and father throughout the ordeal demonstrating that a crisis like this can be shared by the CHD family and they can grow in love and understanding for surviving such a situation.

I highly recommend this book.

I will be reviewing books once a month on my blog. If you have a book you would like for me to consider, you can mail it to me at:

Anna Jaworski - book reviewer
Baby Hearts Press
3910 Sierra Blanca Blvd.
Temple, TX 76502-1662

Next month I will review Amanda Rose Adams' book Heart Warriors:  A Family Faces Congenital Heart Disease.

Friday, March 22, 2013

United We Stand

Talking about working together with one another in the congenital heart defect (CHD) community is one thing; actually experiencing working together is both uplifting and inspiring.

It all started with me a week ago when my son, Alex, came home from college for Spring Break. He is my connection to the heart world. It is because of Alex that I became aware that CHDs are the Number One birth defect. It is because of Alex that I learned about the fragility of life. It is because of Alex that I learned to treasure each and every day and each and every person who makes my heart sing.

On Saturday, bright and early in the morning, Frank (my husband), Joey (my older son), Alex and I met our dear friends, Laura and Ryan Redfern at the Mueller Lake Park in Austin, Texas near Dell Children's Hospital. We took part in the Children's Heart Foundation (CHF) Central Texas Heart Walk. There were several delightful things about this walk -- 1) my nuclear family and my adopted family (Laura and Ryan) were taking part in something special on a beautiful (albeit windy and cold!) spring day in Texas; 2) I finally got a chance to meet Bill Foley in person -- he is the Executive Director of the CHF and we've spent a good deal of time talking on the phone together about the CHD community and how we wanted to change things for the better; 3) I had a chance to see and give a hug to Katie Cataldo -- which may not seem that remarkable since she and I had spent Friday together working on Baby Hearts Press (Katie is BHP's newest intern and she is teaching me about social media) but I never take a hug from her for granted; 4) I had a chance to see Sarah Berg and some of the other Children's Heart Foundation - Texas Chapter volunteers which is always a delight and 5) I reveled in the fact that we weren't just walking for the CHF but we were also walking for the Adult Congenital Heart Association (ACHA). Finally I was not only seeing some CHD organizations working together, I was part of it!

This is a photo of Alex, Frank, Joey and me at the heart walk. 
(Photo taken by Laura Redfern -- thanks, Laura!)

Here we are in a place where the wind wasn't blowing so fiercely. 
We're standing next to a Scrabble cow that adorns one of the buildings near the lake. 
Since all of us love Scrabble, we thought this would be a fun photo to take.

Here are Laura and Ryan with the same cow.

I've been writing about how the CHD community needs to unite. On Saturday the CHF and the ACHA united. The results were remarkable. While the final totals are not in, we know that united we raised at least twice as much money as our goal! Just yesterday a dear friend from Texas State Technical College asked if it was too late to contribute to the walk. I then received an email stating that Betty had made a donation to Team Alex. I can't wait to hear what the final total for the walk is!

Sunday Joey and I boarded a plane for Washington, D.C. We went there to be part of the ACHA Advocacy Day. But once again, it wasn't an event only sponsored by the ACHA -- instead the ACHA had united with Mended Little Hearts to make this event a reality.  This was the first time for Joey and me to be part of the legislative process up close and personal. I had written many letters and taken part in Congenital Heart Defect Awareness Day in a number of states over the years, but I had never spoken in person to people who had a chance to change laws for the betterment of the CHD community. The ACHA welcomed all of us to D.C. and taught us how we could unite -- all 120 of us! Yes! One hundred twenty members of the CHD community from 27 different states all came together for this historic event! They set up appointments for us to meet with our lawmakers and then we rejoiced together at a dinner after all was said and done.

But before we descended upon the Hill, we had a lovely Welcome Reception sponsored by the American College of Cardiology at the Heart House. Luckily for us the Heart House was very close to the Park Hyatt Washington Hotel since it was raining and cold.

Here I am with a clean-shaven Joey in the Heart House.

This is an impressive stethoscope display at the Heart House.
This is a "song" by Oliver Wendell Holmes called "The Stethoscope Song" 
also on display at the Heart House.

The reception was lovely and was followed by a wonderful pasta dinner at the hotel. The next day was when we started our training. Since we only had three people from Texas at the event, we shared a table with the lovely people from Tennessee. I think one of my favorite parts of the 2-day event was meeting people I've "met" over Facebook in person! But better than that, about 15 years ago, shortly after I published my first book, Hypoplastic Left Heart Syndrome: A Handbook for Parents, I received a phone call from a mother in New Jersey. That mother had a daughter born with HLHS, just like my Alex. We spent time talking and bonding on the telephone. On Monday I had actually met that mom and her daughter, Tara in person! It was like a reunion. Here is a photo of us.

Anna, Joey, Tara and Barbara McFadden

Of course our whole purpose for being in Washington, D.C. was to meet lawmakers and our day started with a bang! We went to a Texas Tuesday Coffee and met Senator Ted Cruz!

This is a photo of Manuel, Ted Cruz, Anna and Joey at the Texas Tuesday Coffee

While waiting for our photo with Senator Ted Cruz, I had a chance to chat with Texas State Director for Senator Ted Cruz, John Drogin. He asked for my card and then started talking to me about CHDs. To my amazement he had two family members affected by CHDs. I'm looking forward to talking to him in the future!

That was just the beginning! We also had a chance to meet with John Cornyn's Legislative Correspondent, Wes Hambrick. He was a very sharp young man who politely listened to Mary Adair (heart mom to Daniel, tetralogy of Fallot) and me while we told him that we hoped John Cornyn would join the Heart Caucus that is just being established. We also hoped that he would increase the funding we're asking for heart research from $2 million to $3 million and finally, we hoped that he would be supportive of the surveillance that has begun in the United States because the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) can help prevent premature death and disability in the rapidly-growing and severely under-served CHD population but before they can do so, they need to know where that population is! Wes conscientiously took notes and then kindly let us take a photo with him.
Anna Jaworski, Wes Hambrick and Mary Adair 
(notice the photo of the longhorns behind us)

Joey and Wes Hambrick

Our next meeting was with Congressman John Carter's Legislative Assistant, Taylor Gilliam. Since we arrived a little early, she kindly listened to our pleas for help and then respectfully listened to Joey, Mary and me as we told our stories about living with CHDs. To our delight Ms. Gilliam told us that she was well aware of some of the legislation being discussed right now because their "neighbor" used to be Gus Bilirakis, who is a Legislative Heart Champion. We felt a great deal of support from Congressman John Carter's staff and we left feeling elated.

By this point in the day my phone was practically dead so Joey took the photo of us with Taylor Gilliam. I will have to upload that after he sends it to me.

All in all it was a wonderful event. I learned so much from the people who trained us, the legislators we interacted with and the other members of the CHD community. When we parted ways many of us promised to return next year. Joey was touched in a special way by this experience and his reports about what we did to his brother made Alex say that he wants to take part next year, too. If we can manage to juggle our schedules and finances accordingly, we hope to bring Frank and Katie with us. If Mary and Manuel show up again next year, too, we'll double our Texas representation!

United we stand. It's more than a motto. It's a philosophy and it's a winning way to achieve beyond our expectations. If you also attended the Central Texas Heart Walk or the ACHA/Mended Little Hearts Advocacy Day on the Hill, please feel free to leave a comment and share your experience!

Thursday, March 14, 2013

Adult Congenital Heart Association Advocacy Day

On Sunday, March 17th my oldest son and I will board a plane for Washington, D.C. to take part in our first Adult Congenital Heart Association Advocacy Day. It is such a blessing for me that my son will be accompanying me on this journey. As a 21 year old, Joey now has a much greater understanding of why it's important for us to be advocates for the CHD community and how much his brother can benefit from certain legislation that will make it possible for him to have a quality life.  This is the link to find more information regarding this historic event.

If you can't go to Washington, D.C. that doesn't mean you can't also help in the movement to make lawmakers more aware of legislation and funding that could benefit the CHD community.  On March 19th there will be over 100 of us in Washington, D.C. but you can be there, too!  Here is a link that you will find helpful  On this webpage you can see how you can also get involved in this advocacy movement. And don't worry! There is even a fill-in-the-blank script to help you know what you should say!

Joining the Adult Congenital Heart Association doesn't cost you any money and it only costs you a small amount of time, but there is power in numbers. The more of us who join together and work together for the common good, the greater our results will be.

Won't you join me in Washington, D.C. by sending a note to your lawmakers and then letting the ACHA know that you're part of the movement? Together we can make a difference! My next blog entry will be from beautiful Washington, D.C.! I can't wait to see who I'll meet, what I'll learn and how Joey and I can make a difference!

Have a great weekend, Heart Friends! I hope I'll see some of you at the Central Texas Heart Walk on Saturday in Austin, Texas. It's going to be a beautiful day!

Thursday, March 7, 2013

Central Texas Congenital Heart Walk

Greetings, Heart Friends!  Today's blog is about an event that is only days away -- The Central Texas Congenital Heart Walk!  This will be happening on March 16, 2013.

Today, in Temple, Texas it was a gorgeous day and 70 degrees.  I am hopeful it will be just as lovely in Austin when we will have our walk around Mueller Lake Park.  This will be the first year my family participates in the walk. We are very excited because Alex will be flying home from college on Friday and Saturday we will take part in the walk as a family. Since Alex was born with a serious congenital heart defect, which has resulted in three open-heart surgeries, it seems most appropriate that Alex be an integral part of our walk.

I hope that everyone in the Central Texas area will come out this year to support the cause (Children's Heart Foundation) because it is a very special organization that has as its mission "to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects." There is no other organization that I know of which is devoted to this one and only cause. 

I am going to set up a team -- Team Alex! Please join us if you like or start your own team. The idea is to get out, support the cause and meet others who champion congenital heart defects -- the Number One Birth Defect. We need to get the word out. We need to let people know that there is not enough being done to prevent these birth defects from occurring and there isn't enough research being done to help prevent the premature death of thousand of innocent victims. United together, we can raise money, fund research and save lives.

To learn more about the walk, or to register a team, please go to this link: 

Thank you for your support.  I hope to see many new and old friends at the walk! I'll post photos in a subsequent blog.