There are days when I feel overcome and humbled by the kindness shown to me and my company. What started out as a project of necessity has certainly turned into a mission which is continually being redefined and expanded. Thanks to the kindness of my friends, I see Baby Hearts Press moving in a totally new direction and it's very exciting, exhilarating and uplifting.
When Baby Hearts Press first started, in 1995/1996, it started because no one wanted to publish Hypoplastic Left Heart Syndrome: A Handbook for Parents. I was the author and the mother of a child with HLHS and I knew there were other mothers and fathers out there who wanted the information in the book I put together. Every single publishing company I queried sent me a rejection letter although many of them had handwritten notes of encouragement on them -- recommending other publishing companies or wishing me good luck. I guess they were the very first friends of Baby Hearts Press, even though BHP didn't exist yet, because they helped me believe in the book I had written.
When I had exhausted all of the publishers that seemed reasonable, I resigned myself to the fact that Hypoplastic Left Heart Syndrome: A Handbook for Parents was not going to be published. Who would guess that a trip to Waldenbooks would change my life forever?
Someone had special ordered a book, Dan Poynter's Self-Publishing Manual but didn't pick it up so it was on a table of single books being sold. At the time it was a purple book and it practically jumped into my hands when I walked into the store. I read the back cover and couldn't believe what I saw there. It said that anyone could publish a book if they just followed the directions inside that purple book. I quickly found my husband Frank and showed him the book. That book became my bible and Baby Hearts Press was born.
Thanks to Dan Poynter I started my own publishing company and published my book. Frank watched the boys while I drove to Office Depot in Austin Texas (Mound, Texas doesn't have any stores!). I had many illustrations in the book, illustrations Frank created to make understanding the complications the HLHS heart, as well as simple illustrations detailing the different surgeries our children might have. When I started copying pages, I noticed that the illustrations could be seen too easily on the other side of the page and I didn't like how it looked. Someone from Office Depot recommended I use thicker paper. I ended up using card stock before I was satisfied! In that one day I made 100 copies, comb-bound each copy and left with quite a bill. It cost me about $7.50 per book. I didn't want to charge too much money for the book so I only charged $15 for the first copies of the book (even though Dan Poynter said publishers needed to charge 8 times the cost of producing the book to make a profit). The next day I could hardly lift my arm for all the pressing I had done with the comb-binding machine. (The manager said I could have a job working at his store any time I wanted!)
I went home and followed Dan Poynter's directions. He said to send copies of the book to Library Journal, the Copyright Office and a number of other places. I did what he said. Within a short period of time I received notification that the book had been received by the Copyright Office (and my check was cashed), the Library of Congress also had a copy of my book. That's when it really felt official! I spoke at a support group I helped found at Brackenridge Children's Hospital, along with heart friend Jane Hunt, and I sold copies of my book to other heart friends. Then I got a phone call for an order of the book -- from Chicago! The lady told me that she read about my book in Library Journal. I was ecstatic! The orders started pouring in. Before long I had sold my first 100 copies of the book. I let go of each and every one of them because I was so excited other people wanted the book so I don't even have a copy of that first edition.
As I watched my stack of books dwindle, I knew it was time to follow Dan's advice (by this time I felt that I was on a first-name basis with Mr. Poynter. As requested, I had sent him a copy of my book and he sent me a lovely letter of congratulations and a ribbon that said AUTHOR on it!) and I started looking for printers to create a paperback version of the book for me. I made some changes, too. By this time I had "met" Teresa Sorlie and learned of her son Matthew's journey -- a child with HLHS who had a transplant. Matthew's Story became part of the book and showed how children could survive by going that route.
I don't have enough time this morning to detail all of the people who helped launch Hypoplastic Left Heart Syndrome: A Handbook for Parents. It is indeed humbling to list the many doctors (especially Alex's surgeon, Dr. John Calhoon, who wrote the Foreword for the book and encouraged me every step of the way!), nurses (so many nurses answered questions I had while Alex had his fenestrated Fontan), parents and friends. If you look in the Acknowledgements section of the book, you can see the many people who helped. I hope I didn't overlook anyone!
I started writing my book in 1995 and it was published in 1996. It is sometimes hard to believe that I've been running Baby Hearts Press for going on 17 years!
This year I have some new friends helping Baby Hearts Press and I'm very excited to see where their questions and encouragement is taking me. I already told you about Mary Black. She is a fellow author but she is so much more than that. We have become each others' Accountability Coach. Thanks to her I can't wait to write my blog every week. She has inspired me and helped me rediscover the joy I have always had when putting thoughts on paper.
Chad Schultz is a new friend to Baby Hearts Press. I met Chad at a Toastmasters event. He met me, found out about my mission and took me under his wing. As a businessman and web designer, he has a wealth of experience that is transforming the way I look at what Baby Hearts Press can and should be. He invited me into his Mastermind group where I have met yet another inspiring person, who affirmed and validated my goals.
I couldn't possibly finish a blog entitled "Friends of Baby Hearts Press" without mentioning the people who helped give Baby Hearts Press a presence on the Internet. Before BHP ever had a website, Sheri Berger reviewed my book on her website. Thanks to her review, I sold books all over the world -- with orders being given via email and checks or cash being sent to me in the mail. There was also a doctor who ran a surgeon's website called "The Scrub Sink" who reviewed my book on his site and provided a link to my email. He also let me write an article about HLHS for his site. Then I "met" heart friend, Kerrie Van Eck (who contributed to The Heart of a Mother), whose brother Brian was a webmaster. He gave me my very first website as a kindness because his nephew, Jonah, was born with HLHS. When he could no longer help me Mona Barmash stepped in and helped for a short time. Then I met Sue Dove at a parenting conference where I was a speaker (in Atlanta) and Baby Hearts Press found its webmistress.
Sue and I had been friends for years online. Her older son was about the same age as Joey (my older son) but he had a heart defect similar to Alex's. Like Alex, Sue's son Scott, also had a Fontan heart. Sue offered to be the webmistress for Baby Hearts Press and we've enjoyed a 15-year relationship that shows no signs of ending.
Baby Hearts Press has had other friends, too. Michelle Rintamaki of Kids with Heart has been a supporter and encourager of Baby Hearts Press and all of my endeavors. Her son is closer to Scott's age than Alex's and he was born with tetralogy of Fallot. Michelle is a mom on a mission who created a clearinghouse of books and resources available to the congenital heart defect community. Like me, she has worked tirelessly to help the community while never drawing a paycheck. Like me, she sinks the money she earns right back into her company because she believes so strongly in the vision and mission of Kids with Heart. I admire how long Michelle has done parent matching and provided local support to other parents in the Green Bay area. We are two kindred spirits.
Oh, dear! I find I could go on and on about all of the Friends of Baby Hearts Press, but I think I'll have to save some of these stories for another blog post. For now let me say that Baby Hearts Press was born of necessity but continues to exist because of the love that lifts it up and the people who believe that everyone deserves true stories that provide hope and encouragement to the congenital heart defect community. It's thanks to all of our friends that we continue to work on new projects. Hypoplastic left heart syndrome is not a condition that is "fixed" and can be forgotten. People who are touched by HLHS know that they are dealing with a life-long condition. At Baby Hearts Press we want to learn everything we can about HLHS and other heart defects so we can educate ourselves and our community to be the best advocates we can be. Please tell your friends about Baby Hearts Press and help us on our mission. Then you, too, can be a Friend of Baby Hearts Press.
Sincerely,
Anna Jaworski
Thursday, February 7, 2013
Thursday, January 31, 2013
Children's Heart Foundation - Texas Debut Chapter Event
I am so excited to announce that I (Anna Jaworski) have been invited to speak at the Children's Heart Foundation - Texas Debut Chapter Event!
Here is a Facebook link to the Event: https://www.facebook.com/events/138370826325119/
I hope all of my Texan heart friends will go to the event and support the Children's Heart Foundation. Because of some of the dignitaries who will be present, you must RSVP to attend. Please let Sarah Berg or me know if you intend to come.
Some of you may not know about the Children's Heart Foundation. From their website I copied this: ". . . The Children’s Heart Foundation was incorporated in Illinois in June 1996. Through 2012, the Children's Heart Foundation has contributed an astounding $5.3 million toward 52 revolutionary congenital heart defect (CHD) research studies. As the country's leading organization solely committed to CHD research funding, CHF dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD."
Like Baby Hearts Press, The Children's Heart Foundation was started by parents in 1996. Both Frank and I, and Betsy and Steve Peterson, had sons born with complex congenital heart defects. Betsy and Steve lost their son, Sam, too soon due to complications from his complex heart defects. The fact that they were able to turn their tragedy into a vehicle for helping others is admirable. They have provided education (they produced a book), a website, a CD of music and, as noted above, an incredible amount of funding to help us better understand congenital heart defects and, hopefully, eventually eradicate them.
Here are the details for the event:
What? Children's Heart Foundation - Texas Debut Chapter Event
When? February 13, 2013 from 5:00pm until 7:30pm
Where? MAX's Wine Dive ATX 207 San Jacinto, Austin, Texas 78701
Why? To meet others in the Central Texas region who are also passionate about helping people with congenital heart defects, to have fun and to raise money for the Children's Heart Foundation-TX. There will be a Silent Auction as well as appetizers & drinks.
We always do everything bigger and better in Texas so bring your wallet and your desire to help this wonderful cause on Wednesday night!
It is an honor to be one of the speakers for this exciting event. I am also excited that, while Alexander (my son born with a single ventricle heart) cannot come since he's in college in New York, one of our friends, Katie Lynn Cataldo, will accompany me to the event! Katie and Alex became friends a little over a year ago when they met at another congenital heart defect fundraiser. Katie was born with hypoplastic right heart syndrome. Here are some photographs of Alex and Katie at her 18th birthday party. It's such a miracle that Alex and Katie are still with us. My heart aches for Betsy and Steve but, thanks to the Children's Heart Foundation, Sam will never be forgotten! Because of his precious life, many other children may be spared from dying too young due to their heart defects. All three of these children -- Alex, Katie and Sam -- are reminders of why we need to treasure each and every day and how one person can make a difference.
Hope to see some of you soon!
Anna
Here is a Facebook link to the Event: https://www.facebook.com/events/138370826325119/
I hope all of my Texan heart friends will go to the event and support the Children's Heart Foundation. Because of some of the dignitaries who will be present, you must RSVP to attend. Please let Sarah Berg or me know if you intend to come.
Some of you may not know about the Children's Heart Foundation. From their website I copied this: ". . . The Children’s Heart Foundation was incorporated in Illinois in June 1996. Through 2012, the Children's Heart Foundation has contributed an astounding $5.3 million toward 52 revolutionary congenital heart defect (CHD) research studies. As the country's leading organization solely committed to CHD research funding, CHF dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD."
Like Baby Hearts Press, The Children's Heart Foundation was started by parents in 1996. Both Frank and I, and Betsy and Steve Peterson, had sons born with complex congenital heart defects. Betsy and Steve lost their son, Sam, too soon due to complications from his complex heart defects. The fact that they were able to turn their tragedy into a vehicle for helping others is admirable. They have provided education (they produced a book), a website, a CD of music and, as noted above, an incredible amount of funding to help us better understand congenital heart defects and, hopefully, eventually eradicate them.
Here are the details for the event:
What? Children's Heart Foundation - Texas Debut Chapter Event
When? February 13, 2013 from 5:00pm until 7:30pm
Where? MAX's Wine Dive ATX 207 San Jacinto, Austin, Texas 78701
Why? To meet others in the Central Texas region who are also passionate about helping people with congenital heart defects, to have fun and to raise money for the Children's Heart Foundation-TX. There will be a Silent Auction as well as appetizers & drinks.
We always do everything bigger and better in Texas so bring your wallet and your desire to help this wonderful cause on Wednesday night!
It is an honor to be one of the speakers for this exciting event. I am also excited that, while Alexander (my son born with a single ventricle heart) cannot come since he's in college in New York, one of our friends, Katie Lynn Cataldo, will accompany me to the event! Katie and Alex became friends a little over a year ago when they met at another congenital heart defect fundraiser. Katie was born with hypoplastic right heart syndrome. Here are some photographs of Alex and Katie at her 18th birthday party. It's such a miracle that Alex and Katie are still with us. My heart aches for Betsy and Steve but, thanks to the Children's Heart Foundation, Sam will never be forgotten! Because of his precious life, many other children may be spared from dying too young due to their heart defects. All three of these children -- Alex, Katie and Sam -- are reminders of why we need to treasure each and every day and how one person can make a difference.
Hope to see some of you soon!
Anna
Thursday, January 24, 2013
A New Year
One of my New Year's Resolutions for 2013 is to update my blog once a week. Thursday is a perfect day for me to do that because of my new friend, Mary Black, who I met at a Literary PR Boot Camp. Mary and I are now each others Accountability Coach! We're going to help each make the most out of 2013 and get our book projects and marketing projects off the back burner and into the real world! We are meeting on Wednesdays and that means I can't wait to come back home to work on the projects we've assigned each other! One of this week's projects was to write a blog post.
The Literary PR Boot Camp (this was sponsored by the Writers' League of Texas) taught me that I should have book trailers for all of my books -- even if they aren't new anymore. I didn't even know what a book trailer was before this workshop! I guess I was a little behind the times, but no more! Thanks to Jennifer Hill Robenalt I now understand how I can add video to my website and how I can let my readers know what my books are all about!
Probably the most exciting part of this process for me has been very personal. "My Brother Needs an Operation" is a book I wrote in honor of my older son Joey. He inspired the book and he is the hero of the book. I wrote the book when Joey was a small child. Now Joey is 21! He and his girlfriend, Esther, are helping me create the book trailer. To add to the excitement, I asked friends on Facebook if they could send me photos of their children and they have! I still need more photos of someone reading the book "My Brother Needs an Operation" to children, but I'm so excited with the photos I've received already. (If you would like for me to consider adding your photo(s), please send me an email at anna@babyheartspress.com.)
My hope is that my next blog post will include a link to the book trailer so you, my faithful readers, can give me feedback. The hope is that the trailer will help people understand how this book can help them through the critical time a family goes through when they have a child in the hospital and siblings who are non-hospitalized.
I'm looking forward to this brand new year, helping Mary complete her first book and working with my son on revitalizing my website and helping people know more about what Baby Hearts Press has to offer. I am thankful to you, my faithful followers, and to my awesome webmistress, Sue Dove, who keeps Baby Hearts Press alive on the Internet.
I hope all of you have a wonderful New Year and check back here often!
Sincerely,
Anna Jaworski
The Literary PR Boot Camp (this was sponsored by the Writers' League of Texas) taught me that I should have book trailers for all of my books -- even if they aren't new anymore. I didn't even know what a book trailer was before this workshop! I guess I was a little behind the times, but no more! Thanks to Jennifer Hill Robenalt I now understand how I can add video to my website and how I can let my readers know what my books are all about!
Probably the most exciting part of this process for me has been very personal. "My Brother Needs an Operation" is a book I wrote in honor of my older son Joey. He inspired the book and he is the hero of the book. I wrote the book when Joey was a small child. Now Joey is 21! He and his girlfriend, Esther, are helping me create the book trailer. To add to the excitement, I asked friends on Facebook if they could send me photos of their children and they have! I still need more photos of someone reading the book "My Brother Needs an Operation" to children, but I'm so excited with the photos I've received already. (If you would like for me to consider adding your photo(s), please send me an email at anna@babyheartspress.com.)
My hope is that my next blog post will include a link to the book trailer so you, my faithful readers, can give me feedback. The hope is that the trailer will help people understand how this book can help them through the critical time a family goes through when they have a child in the hospital and siblings who are non-hospitalized.
I'm looking forward to this brand new year, helping Mary complete her first book and working with my son on revitalizing my website and helping people know more about what Baby Hearts Press has to offer. I am thankful to you, my faithful followers, and to my awesome webmistress, Sue Dove, who keeps Baby Hearts Press alive on the Internet.
I hope all of you have a wonderful New Year and check back here often!
Sincerely,
Anna Jaworski
Monday, February 21, 2011
In Memory of Bethany
My friend's daughter died yesterday. She didn't have a heart defect, as so many of my friends' daughters have. It wasn't her heart that let her down. It was her heart and her spirit that made us love her.
My friend's daughter was a special needs child. A child who was abandoned. Unwanted by some but very much wanted by one very special lady. Dee Dee saw past Bethany's disabilities and fell in love with the spirit and heart of a warrior. Dee Dee was more than a nurse and a mother to Bethany. She adopted her legally but more than that, she made Bethany part of a world that would otherwise have forgotten her, discarded her like a broken doll. Dee Dee brought out Bethany's humanity and showed us all that her special little girl had something to share with the world and she would be the messenger to help Bethany deliver her message.
Bethany was paralyzed. She was blind. She couldn't talk like most people but she could communicate. Dee Dee loved Bethany. She made her dresses to match hers and her sister's. Bethany rode proudly in her wheelchair to church and other events. Bethany was part of our community and although there wasn't much that most of us could do for Bethany, we could acknowledge her. We could smile at her smiles and if we could see past the paraphenelia necessary to keep Bethany alive, then we could see an angel here on earth.
Bethany is no longer here to remind us of the fragility of life. She is no longer here to touch our hearts because of her courage. Doctors told Dee Dee that Bethany wouldn't survive, but Bethany had other plans. She beat the odds time and again. She made a mother tiger out of Dee Dee -- one of the strongest child advocates I know. Bethany taught Dee Dee what it means to fight and she fought the good fight.
Rest in heaven, sweet Bethany. Maybe now you can run and play, laugh and sing in a way you couldn't do here on earth. I hope that you can. But I also hope that you can send a rainbow Dee Dee's way, or maybe a butterfly or some kind of sign to let her know that part of you is still here and that part of you will be watching over her now. Dee Dee was your guardian angel for years, Bethany, but now it's your turn to be hers.
My friend's daughter was a special needs child. A child who was abandoned. Unwanted by some but very much wanted by one very special lady. Dee Dee saw past Bethany's disabilities and fell in love with the spirit and heart of a warrior. Dee Dee was more than a nurse and a mother to Bethany. She adopted her legally but more than that, she made Bethany part of a world that would otherwise have forgotten her, discarded her like a broken doll. Dee Dee brought out Bethany's humanity and showed us all that her special little girl had something to share with the world and she would be the messenger to help Bethany deliver her message.
Bethany was paralyzed. She was blind. She couldn't talk like most people but she could communicate. Dee Dee loved Bethany. She made her dresses to match hers and her sister's. Bethany rode proudly in her wheelchair to church and other events. Bethany was part of our community and although there wasn't much that most of us could do for Bethany, we could acknowledge her. We could smile at her smiles and if we could see past the paraphenelia necessary to keep Bethany alive, then we could see an angel here on earth.
Bethany is no longer here to remind us of the fragility of life. She is no longer here to touch our hearts because of her courage. Doctors told Dee Dee that Bethany wouldn't survive, but Bethany had other plans. She beat the odds time and again. She made a mother tiger out of Dee Dee -- one of the strongest child advocates I know. Bethany taught Dee Dee what it means to fight and she fought the good fight.
Rest in heaven, sweet Bethany. Maybe now you can run and play, laugh and sing in a way you couldn't do here on earth. I hope that you can. But I also hope that you can send a rainbow Dee Dee's way, or maybe a butterfly or some kind of sign to let her know that part of you is still here and that part of you will be watching over her now. Dee Dee was your guardian angel for years, Bethany, but now it's your turn to be hers.
Tuesday, February 15, 2011
CHD Conference in Fort Worth on February 19, 2011
Greetings, Friends of the CHD Community!
Today I received a phone call from Kathy Grieser of Cook Children's Hospital. She is part of the planning committee for the very first congenital heart defect conference for parents at Cook Children's Hospital. I signed up for the conference a few weeks ago thanks to Facebook. I think it's great that we can use Facebook to let us know about events of interest to us. Here is the link for anyone else interested in attending this conference: Cook Children's CHD Family Conference
Kathy told me that she saw my books on the Internet and invited me to bring some to the conference. I'm glad I will have have my husband, my father and my son there to help me! We will be bringing books, DVDs and audio CDs of AHA conferences where I have spoken and bookmarks for everyone who attends. We will offer a one-day, in-person special: Any book 40% off or any 3 books for $35 (plus tax). This is a HUGE savings and will only be done in Fort Worth at the conference. We will not have the ability to process credit cards but we will accept cash, checks or payments from PayPal. We will have our computer but I'm not sure the hospital has Wi-Fi. I have a called to find out, but don't know the answer yet.
Paul Cardall will be the keynote speaker and he will also play piano for the conference attendees. I can't wait to meet him! He will also have his CDs available for sale at the conference.
There are special activities for the children and there are even teens who will be present. I'm glad Alex will not be the only teenager at the event. I think he's glad that I'll be attending the event as a participant and not as a speaker (telling stories on him!).
I hope to see some of my Internet friends at the event. Please check out the Facebook page for more information. You must RSVP to attend. I believe there are at least 80 people registered already! It should be a great crowd and a great day of activities!
Today I received a phone call from Kathy Grieser of Cook Children's Hospital. She is part of the planning committee for the very first congenital heart defect conference for parents at Cook Children's Hospital. I signed up for the conference a few weeks ago thanks to Facebook. I think it's great that we can use Facebook to let us know about events of interest to us. Here is the link for anyone else interested in attending this conference: Cook Children's CHD Family Conference
Kathy told me that she saw my books on the Internet and invited me to bring some to the conference. I'm glad I will have have my husband, my father and my son there to help me! We will be bringing books, DVDs and audio CDs of AHA conferences where I have spoken and bookmarks for everyone who attends. We will offer a one-day, in-person special: Any book 40% off or any 3 books for $35 (plus tax). This is a HUGE savings and will only be done in Fort Worth at the conference. We will not have the ability to process credit cards but we will accept cash, checks or payments from PayPal. We will have our computer but I'm not sure the hospital has Wi-Fi. I have a called to find out, but don't know the answer yet.
Paul Cardall will be the keynote speaker and he will also play piano for the conference attendees. I can't wait to meet him! He will also have his CDs available for sale at the conference.
There are special activities for the children and there are even teens who will be present. I'm glad Alex will not be the only teenager at the event. I think he's glad that I'll be attending the event as a participant and not as a speaker (telling stories on him!).
I hope to see some of my Internet friends at the event. Please check out the Facebook page for more information. You must RSVP to attend. I believe there are at least 80 people registered already! It should be a great crowd and a great day of activities!
Monday, February 14, 2011
Happy Congenital Heart Defect Awareness Day!
Greetings all Heart Friends and Family!
Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.
According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100. The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:
American Heart Association CHD Statistics
I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified. Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects." I hope that in changing the wording they don't make it more difficult for others to find the information they need.
But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet." It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.
I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.
In that vein, I am here blogging about CHDs. There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as: Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart Defects.com, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.
The one thing we parents of children with heart defects want to know is that We Are Not Alone.
There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Defects.com: Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.
With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide.
I hope all of you have a terrific Congenital Heart Defects Awareness Day. Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.
Sincerely,
Anna Jaworski
a CHD Heart Mom
Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.
According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100. The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:
American Heart Association CHD Statistics
I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified. Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects." I hope that in changing the wording they don't make it more difficult for others to find the information they need.
But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet." It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.
I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.
In that vein, I am here blogging about CHDs. There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as: Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart Defects.com, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.
The one thing we parents of children with heart defects want to know is that We Are Not Alone.
There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Defects.com: Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.
With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide.
I hope all of you have a terrific Congenital Heart Defects Awareness Day. Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.
Sincerely,
Anna Jaworski
a CHD Heart Mom
Tuesday, February 8, 2011
Heart Week
Greetings, Heart Friends! This is a very special week. February 14th, as well as being Valentine's Day, is also Congenital Heart Defect Awareness Day. All week long people around the world will be celebrating this special time. Many of us are counting our blessings that medical technology has been able to save our "heart children." Some of us are remembering special people we know of who were born with heart defects and are now angels watching over us.
During this Heart Week please consider talking to your family about organ donation. Many people do not discuss this important issue. This is an important topic for conversation. If something were to happen to you, would you want to donate your organs? Your eyes? Your bones? If you could save a life as yours was ending, would you?
Alexander would not be with me today if it were not for the kindness of others. Some people have donated blood to him. He had cadaver tissue at the ready during his first open-heart surgery (although he didn't end up needing it). We have friends whose children would not be here today were it not for the sacrifices other families made.
Kevin Kienlein, a contributor to "The Heart of a Father" is the most recent recipient of a transplant that I'm friends with. Kevin received the heart and lungs of a generous individual and is recovering today. What a miracle! Out of the depths of despair, one family found it in their hearts to give Kevin their daughter's heart and lungs and because of that, Kevin will soon be playing in his band, taking photographs and enjoying every breath he takes.
Happy Valentine's Day! Happy Congenital Heart Defect Awareness Day! Blessings to all of you who talk to your families and decide to give the gift of life to someone else.
During this Heart Week please consider talking to your family about organ donation. Many people do not discuss this important issue. This is an important topic for conversation. If something were to happen to you, would you want to donate your organs? Your eyes? Your bones? If you could save a life as yours was ending, would you?
Alexander would not be with me today if it were not for the kindness of others. Some people have donated blood to him. He had cadaver tissue at the ready during his first open-heart surgery (although he didn't end up needing it). We have friends whose children would not be here today were it not for the sacrifices other families made.
Kevin Kienlein, a contributor to "The Heart of a Father" is the most recent recipient of a transplant that I'm friends with. Kevin received the heart and lungs of a generous individual and is recovering today. What a miracle! Out of the depths of despair, one family found it in their hearts to give Kevin their daughter's heart and lungs and because of that, Kevin will soon be playing in his band, taking photographs and enjoying every breath he takes.
Happy Valentine's Day! Happy Congenital Heart Defect Awareness Day! Blessings to all of you who talk to your families and decide to give the gift of life to someone else.
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