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January 2014 Newsletter
 
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Empowerment for the Congenital Heart Defect Community

Miracle Moments


by Callie Rickard
Graphic Designer, Heart to Heart with Anna






What is a miracle moment? Is it something so amazing and transcendent that only God can be credited with it happening? The dictionary defines a miracle as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.
 
I haven’t met a heart mom or dad who can’t describe exactly what a miracle is, for all heart moms and dads have experienced at least one miracle moment if not many. There is no measurement that can be held up to assess whether a particular moment is actually a real miracle or not, but once they happen, you know it, and you feel it in your soul.
 
A smile, a look, a moment breathing freely on one’s own. First steps, words, friends, and that moment when a parent gets to take a step back and watch their child play, even briefly, happily and carefree.
 
Is it a miracle when they take that first bite of food and it goes down smoothly? Oh yes! It most definitely is, if you ask a parent with a child with oral aversion who has been mostly fed by tubes.
 
What about that first tromp across soft grass in the warm summer air? Yes, of course it is! Just ask the mom who’s spent long stays in the hospital with her child, or the dad of the child who has sensitivity to touch and couldn’t take all the stimulation of grass, until that one bright summer day.
 
Watching our children do what’s “normal” is the biggest miracle of them all. It’s what we’ve spent late nights hoping and praying for. Tearing up at the idea and burying the thoughts for another time as we get through one more surgery and recovery. But then that time comes. We hear their sweet words, see the light in their eyes as they discover a butterfly or smell a sweet flower. And we know, we’ve experienced a miracle moment.



If you are interested in contributing an article for publication in Heart to Heart with Anna's monthly newsletter, please email Anna Jaworski for details about topics and guidelines at anna@babyheartspress.com
What we're talking about in January on Heart to Heart with Anna



Sports and Extra-Curricular Activites for Congenital Heart Defects Survivors
 
  

Airs: January 14, 2014 at noon Pacific Time; 2 p.m. CST
 
Have you ever wondered what sports or extra-curricular activities your heart child will enjoy some day? Have you wondered about the quality of life they will have in their future? Will they be able to enjoy the sports their peers do? Play in a band? Enjoy clubs with their friends? Listen to this important episode to see how three adults with congenital heart defects found opportunities to be with their peers, how they circumvented some problems that presented themselves and where they are and what they are doing today.


How Parents' Relationships are Affected by Having a Child with a Congenital Heart Defect
 

Airs: January 21, 2014 at noon Pacific Time; 2 p.m. CST
 
Is divorce or less common in families who have children with congenital heart defects? It seems only logical that the additional stresses of hospital bills, an uncertain future, the requirement of making decisions one may not feel qualified to make and the grief involved with the loss of having a perfectly healthy baby might contribute to the loss of a marriage as well. Listen to three parents as they talk about the trials they faced as they were told their children were born with severe heart defects and how they dealt with it. If a marriage ends in divorce, can a parent ever find another person to love, not only them but also their broken-hearted child? Tune in to discover the answers to these questions and more!
 

Non-Cardiac Health Issues for Adults with Congenital Heart Defects

 

Airs: January 28, 2014 at noon Pacific Time; 2 p.m. CST
 
What kind of non-cardiac health issues do complex congenital heart defect (CCHD) survivors frequently deal with? Why do people who have heart defects sometimes have other issues, too, even if they don’t have a diagnosed syndrome? What can parents do to help their children when they are not only facing open-heart surgeries, but also other possible surgeries or treatments? Tune in to Heart to Heart with Anna Episode #12 to hear how an adult CCHD survivor, the parent of a son with a CCHD and a geneticist from a leading children hospital answer these questions and more. 

 
What is Normal Child Development in Children with Congenital Heart Defects?
 


Airs: February 4, 2014 at noon Pacific Time; 2 p.m. CST
 
Do children with complex congenital heart defects or CCHDs have developmental delays compared to their heart-healthy peers? What IS the normal development of a child with CCHDs? How can parents help children with CCHDs to have a good quality of life despite some of the problems that are common in children with complex congenital heart defects? Tune into this episode of "Heart to Heart with Anna" as a Heart Mom and Speech/Language Pathologist, Heart Mom and Special Education Teacher and a Neuropsychologist discuss what “normal” is for our CCHD survivors and how parents can help their children overcome common problems. 

More CHD Info:

 

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Featured Book:

The King
of Hearts

by G. Wayne Miller
 
The current conception of surgeons ranges from those who think they are merely "fix-it" men and women to people who think they are God. This book focusing on Walt Lillehei demonstrates that he was a great surgeon--certainly a fix-it man extraordinaire and a great humanitarian, but definitely NOT God!

It amazes me that a man could be so instrumental in totally changing the world of heart surgery, yet most people have never heard of him. G. Wayne Miller's account of this incredible surgeon's life will certainly change that! As a professional journalist, Mr. Miller conducted countless interviews and an exhaustive review of the literature to bring this true account of one man's gift to the world to life.

This is no ordinary biography, however. Mr. Miller has a way of writing that makes you feel you are right in the operating room with the surgeon. You can almost see the heart, feel the heartbeats of those delving where no one had been before and cry the tears that some of the more sensitive surgeons shed when precious lives were lost.

As the mother of a child with a congenital heart defect, I felt myself crying for the parents who so bravely allowed surgeons to do whatever they could to save their children's lives. I held my breath over the descriptions of experimental surgical techniques and the creation of medical equipment--some with beer hose and farm equipment! It gave me a greater appreciation of the sacrifices and guts needed to make the impossible commonplace.

When I attended a conference for cardiothoracic professionals, one of the speakers mentioned Walt Lillehei. He said that all of the surgeons in the room were no more than 6 people removed from this great surgeon. Dr. Lillehei is largely responsible for training two generations of heart surgeons and the saving of countless lives.

Reading this book gave me yet one more surgeon to be thankful for. This book is an honest look at a complicated man who changed the world. Mr. Miller is to be congratulated for writing a most memorable book. Bravo!

Anna Jaworski

 
 
CafePressCome visit Heart to Heart with Anna's new boutique on Cafe Press!

There are wonderful gifts for family and friends including jewelry, journals, mugs, and much more! This is a great way to support our show and give a beautifully unique gift that reinforces 
"You Are Not Alone!"

The Evolution of Pacemakers
 
 
For over 100 years doctors have been conducting experiments using electricity to stimulate the heart, with various levels of "success." The first pacemaker was implanted in a human in 1958 and although the recipient had to have it replaced many times over the course of his life, the recipient, Arne Larsson (viewed above), outlived both the inventor of the device and the surgeon who implanted the device(s) in his heart!
 

As many people know, the first company to make an implantable pacemaker was Medtronics. Initially the device was rather large (see photo of the implantable device above in Arne's hand) and it included wires (leads) plus a box that contained controls for the device. I am amazed by the history of the artificial pacemaker and the fact that Medtronics has not rested on its laurels. Constantly revising and improving their devices, they have now come up with something so remarkable, it seems like science fiction!
 

What is science fact, though, is that Medtronics has recently unveiled the world's smallest pacemaker yet! At one-tenth the size of a regular pacemaker, this device is tiny but its size is not the only feature that sets this pacemaker apart from the pacemakers of yesteryear. What makes this device so unique is that it doesn't require any wires (or leads)! This means there is one less potential complication for pacemaker recipients to have to worry about! The device is introduced directly into the heart via a catheter inserted through the femoral artery, which should reduce the opportunity for infections and result in a shorter, less complicated hospital stay.
 

This device is known as the Micra and in the photo above, you can see what it would look like inside a human heart. This is totally amazing! It is currently being tested in Austria.

For more information, read Medtronic's press release: Medtronic's Smallest Pacemaker

~Anna Jaworski
http://babyheartspress.blogspot.com/
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