Guest Blog by: Lisa Schaffer

Dear Friends:

In honor of Mothers' Day, I invited a Heart Mom to prepare a guest blog for Baby Hearts Press. We are very blessed that Lisa Schaffer was willing to share her story with us. Please take a moment to enjoy her blog site as well!

Anna

  

My Story

By: Lisa Schaffer

It was early 2006 and I was standing in the pediatric specialty clinic lobby in front of a large display rack of cardiology brochures and pamphlets.  I saw information about a variety of heart defects including pulmonary stenosis, septal defects, and transposition of the great arteries-all of which affected my newborn son in some form.  Our new pediatric cardiologist walked by, paused, then turned and looked me in the eye.  “You will not find anything on that rack that is even close to what you are dealing with,” he said solemnly as he patted my shoulder.
 

My search had actually started months before my son was born and consisted mostly of snippets of information I had pieced together.  That’s how I eventually learned about Anna Jaworski; I found her website.  I’m not sure exactly when I connected Anna, Baby Hearts Press and CongenitalHeartDefects.com. I think that happened much later when Facebook became such a huge CHD support source.  I remember CongenitalHeartDefects.com as one of the websites I used to learn about a variety of heart defects, along with additional resources to further my education.  Eventually, I found other mothers like me, mothers searching for information about complex CHD.

Seven years later, I feel well-equipped in my knowledge of CHDs.  No, I don’t claim to know it all and I certainly do not understand the complicated balance my son’s cardiologist must maintain in order to keep my son’s heart in working order.  But, I know enough to ask the right questions and to educate myself, thanks to those who were passionate enough about CHD (like Anna) to devote their time and energy to create websites and support forums, and to write books that further CHD awareness.

My name is Lisa.  My blog is called, “All That and a Box of Rocks.”  It is about … everything -- my crazy, happy life.  As complicated as it sounds, it is a very happy life.  I write about life with six kids (five living). Among them I have one with Autism, one with Asthma, one heart warrior with Autism, one heart angel, and three almost normal teens/young adults. (I kid…what the heck is normal, anyway??)

I am one of the few mothers you will ever meet with two complex heart kids—it just does not happen that often. My boys were born thirteen years apart with variations of TGA and hypoplasia.  Even though doctors tell us two cases of TGA variant is definitely genetic, our testing reveals nothing out of the norm.  Twenty years ago, I barely had a chance to understand CHD-the Internet at home was rare, limited to the rich and famous, and my son died when he was only nine weeks old.  He never left the hospital.  When I walked through the hospital exit that last time, I shut the door on CHD…or so I thought.  I never expected to relive CHD.

I started my blog in 2006 for a variety of reasons: family, memory preservation, homeschooling, faith, life…and it has evolved over the years to become a virtual mind dump.  Sometimes I blog a lot and sometimes I do not.  My goal is to become more consistent.  I am planning to start a couple of regular series:  Living with CHD-Moments of Life as a Heart Mom and Living with Autism-Moments of Life as an Autism Mom. I think we learn so much when we share our deepest thoughts and real-life experiences.  

If you feel led to wade through the pieces of my life I dare to share, please join me at http://lisaschaffer.blogspot.com where I will be keeping it real, one blog post at a time.

Happy Mothers' Day!

Dear Heart Friends, but especially you Heart Moms and Grandmas:

Happy Mothers' Day!!!

In honor of women everywhere, for the rest of the month Baby Hearts Press will sell The Heart of a Mother for half price -- both the print version and the ebook version.  Have you ever wondered how a mom feels when she finds out she is pregnant with a baby whose heart isn't perfect? How do military moms deal with having a child with a life-threatening heart defect? What about grandmothers? How are they affected?

Answers to those questions and many more are in the book The Heart of a Mother. With over 60 contributors from around the world, there will be stories to touch everyone's heart. The amazing thing about this book is that it clearly demonstrates how we heart moms have so much more in common than we do differences despite living in different locations with different cultures and sometimes even different languages. The way we heart moms feel and even many of our experiences are so similar it's almost eerie.

Some books portray the ugly side of raising a child with a heart defect but The Heart of a Mother is an inspiring book that uplifts even as it educates people about the #1 birth defect -- congenital heart defects. The book covers everything from finding out in utero that a baby will be born with a heart defect to actually losing a child due to a serious heart defect and everything in between. But what makes The Heart of a Mother special is the fact that all of these mothers, regardless of their educational level, background or culture are dignified women who tackle their challenges head on as they become fierce advocates for their children and themselves. The Heart of a Mother puts words on experiences that many women find difficult to describe. The Heart of a Mother unifies a worldwide community within the borders of its pages and helps women and men everywhere know they aren't alone.

I hope you will share the information about the special with everyone you know. This book is a gift that will last a lifetime. It's a gift that will be treasured. It's a gift that will help the reader to appreciate her own experiences and show her how to be a better advocate for herself and her child. This book could very well change a person's life.  Go to http://www.babyheartspress.com to order this book and others by Baby Hearts Press.

Happy Mothers' Day again, dear friends. I hope your day was as beautiful as mine.

Sincerely,

Anna Marie Jaworski
mom to Joey (21; heart healthy) and Alex (18; DILV, single ventricle)
Children's Heart Foundation-Texas Chapter Vice President
Owner of Baby Hearts Press
www.babyheartspress.com
www.congenitalheartdefects.com
Author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
Editor of The Heart of a Mother, The Heart of a Father and Hypoplastic Hearts Through the Years (in progress)

House Bill 740

Dear Heart Friends:

Tomorrow is an important day for the heart community in Texas.  Many of us have been hard at work in Texas to bring to the attention of legislators that ALL babies born in Texas should have a simple pulse oximetry test before leaving the hospital to ensure that the baby's oxygen saturation level is where it should be. While this simple, inexpensive, non-invasive and easy-to-administer test will not detect all heart defects, it can at least alert the medical staff that something could be amiss in an otherwise healthy-looking infant.

Even though my husband thought something was wrong with Alex the moment he was born, he was told that Alex simply had newborn breathing. Even though, for 8 weeks, I continued to be concerned about Alex's sleepiness and the fact that he couldn't stay awake while nursing and never awoke crying and wanting to be fed, I was told by lactation consultants, nurses and doctors not to compare Alex to my firstborn, Joey and that he was "petite" just like I was. Even though I gave my August-born baby a sunbath after every daytime feeding and I was concerned about his jaundice, I was told that he just had "breastmilk jaundice" after they measured his bilirubin and he wasn't yellow enough to be put under the bili lights.

One simple test, pulse oximetry, would have told us what nothing else did. My son's oxygen saturation levels were in the 80s. This meant he wasn't really blue to the untrained eye but since most babies have an oxygen saturation level of 99-100, clearly something was wrong!

Had Alex been given this simple, non-invasive test when he was a newborn, red flags would have gone up and an x-ray would have revealed a smaller-than-usual heart. An ultrasound of the heart would have revealed that Alex had a number of congenital heart defects. A catheterization would have shown that Alex needed open-heart surgery.

Alex never would have gone into congestive heart failure. My husband and I wouldn't have been treated like over-protective parents. We wouldn't have spent 8 weeks wondering why Alex was so hard to feed and why he wasn't gaining any weight.

I remember that shortly after Alex had his open-heart surgery and we were home again there was another employee who worked with my husband who had a baby.  Sadly that baby died in its sleep. I couldn't help but wonder if that baby also had a heart defect -- which might have been picked up with pulse oximetry. We'll never know. Instead, the mother was told the baby died of SIDS (sudden infant death syndrome). Passing House Bill 740 could mean catching a potentially fatal heart defect so one less infant dies.

We were lucky that Alex had a good outcome despite the missed diagnosis during his well-baby check-ups and visits to Newborn Follow-Up and with lactation consultants. Not all babies are so lucky. If this bill saves just one baby's life, it will be worth all the letters that we in the heart community have sent to our legislators to pass bills like this one. Bills like this one have been passed in other states already. My hope is that someday babies will receive pulse oximetry as standard care before leaving the hospital no matter where they are born.

If you have a minute, please write to our Texas Senators to let them know how important this bill is to you. It will be voted on TOMORROW!

Here is the contact information for John Coryn:  www.cornyn.senate.gov/public/index.cfm?p=ContactForm

and here is the contact information for Ted Cruz:  www.cruz.senate.gov/contact.cfm

I intend to write to both of them again and plead with them to pass HB 740.  HB 740 was referred to the Senate and the Health and Human Services Committee. The hearing starts at 9:00 a.m., so this item will be taken up sometime after 9:00 am. It should be live on video as this committee is meeting on the Senate floor.

 

You can watch here:

 

http://www.senate.state.tx.us/bin/live.php

 

If it makes it through committee tomorrow, the next stop is the Senate floor.  If it passes the Senate then it becomes law (unless the Governor vetoes the bill).  We may need to write letters to Governor Rick Perry showing our support for the bill, but since his wife was a nurse, I'd like to think we wouldn't have to do that!

Special thanks to Ashley Forbes of the Children's Heart Foundation - Texas Chapter for keeping us informed on how this bill is progressing. 

Anna Marie Jaworski
mom to Joey (21; heart healthy) and Alex (18; DILV, single ventricle)
Children's Heart Foundation-Texas Chapter Vice President
Owner of Baby Hearts Press
www.babyheartspress.com
www.congenitalheartdefects.com
Author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
Editor of The Heart of a Mother, The Heart of a Father and Hypoplastic Hearts Through the Years (in progress)

 

Baby Hearts Press' First Guest Blogger -- Katie Cataldo!

I first have to say how excited I am to be a guest blogger this month for Baby Hearts Press!

Well, let me introduce myself. I am Katie Lynn Cataldo and 18 years ago I was born with a congenital heart disease called Hypoplastic Right Heart Syndrome.  I had my first heart surgery when I was 3 days old, which was the BT shunt.  I had my Open Heart Surgery when I was 4 years old, a Glenn.  My last heart procedure was 8 years ago.  I have been so blessed to be a healthy HRHS patient. 

I went 15 years not knowing any other CHD patients.  I did go through a moment in my life were I felt different and like no one knew how I felt as a kid.  I was always so unique because no one else had a big scar on their chest.  I would constantly get asked what happened to me and I have to say some of their conclusions were pretty funny.  Finally, at the age of 15, I decided to learn more about my heart condition.  In finding out all about my heart, I began to come in contact with other families and patients with congenital heart disease. It’s crazy how a little social media network like Twitter can get you connected to many other CHD patients.  I went from knowing only myself born with a heart defect, to finding out 1 out of 100 babies are born with a heart defect, and it’s the number one birth defect in America.

Now I am excited to be doing so much in the CHD community and working with Anna Jaworski for Baby Hearts Press.  Three years ago if you would have told me I would be talking to CHD families all over the world and helping organizations with awareness, I would have laughed and said that was not the kind of thing I could do.  But, here I am and looking forward to do more.

 • Katie is also a blogger for Heart Waves.  You can read more by Katie here: http://www.heartwaves.org/congenital-heart-defect-information/?Author=Katie%20Cataldo

Saving Lives and Giving Hope

Saving Children's Hearts

Recently I reviewed a book that talked about a non-profit organization called Save a Child's Heart http://www.saveachildsheart.org/. I thought the book (Sabrina: The Girl with a Hole in her Heart http://www.amazon.com/SABRINA-GIRL-WITH-HOLE-HEART/dp/0615478190/ref=sr_1_fkmr1_1?ie=UTF8&qid=1365918364&sr=8-1-fkmr1&keywords=sabrina+girl+with+broken+heart was very interesting and a concept I had heard of before and I was curious what other organizations there are available to help children with congenital heart defects.  There's an excellent Q & A about Save A Child's Heart here:  http://www.saveachildsheart.org/366-en/QuestionsAndAnswers.aspx  This page discussed answers to questions regarding donations, how to get a child help, how people can volunteer and what opportunities there are for medical students.  Save a Child's Heart is based in Israel.

The International Children's Heart Foundation http://babyheart.org/ is an organization with a mission identical to Save A Child's Heart. Both organizations believe in the sanctity of human life. Both feel that children, regardless of whether or not their parents can afford surgery, deserve a chance for life. Both organizations take care of children who otherwise would be overlooked, forgotten or simply neglected by their local medical community because their own neighborhood doesn't have the resources needed to care for a child with a congenital heart defect or because their parents can't afford the costly surgery necessary for the child to survive.

The ICHF has performed over 6000 surgeries since it began in 1993. While they know they can't save every child with a heart defect, they are doing what they can to save as many children as they can with the resources they have.

The last organization I will briefly discuss is the Take Heart Association Project http://www.thapkenya.org/.

This organization helps children in Keyna who were born with congenital heart defects. Thanks to the Take Heart Association Project 120 children have been able to return home to live healthy lives. They take care of the poorest children in their country and they do it because:

More than 10,000 babies are born in Kenya with a congenital heart defect each year. However, at this time, there is no dedicated congenital heart program in all of Africa. Lacking the access to modern medical care, many of these children die needlessly in their early childhood years.

Since 1992, THAP has sponsored 120 children to undergo heart surgery many from the poorest areas surrounding Nairobi, Kenya - to undergo successful heart surgery in Kenya, India, Italy and the United States.

THAP also assists the children by providing pre- & post-op diagnosis, medicine, accomodations and transportation for the children who travel to Nairobi from remote areas for medical treatment.


I find it touching that it was so easy for me to find three outstanding organizations with the same mission:  Saving Children Born with Broken Hearts. All of these organization cater to families who cannot afford the expensive treatments needed to save children with complex congenital heart defects.  All of these organizations seem blind to race, religion or political beliefs. Their sole concern is saving children who would otherwise be lost.

If you, or someone you know, would like to get involved in helping one of these organizations, please check out their websites. There are many opportunities to serve these organizations. While financial donations are always needed and appreciated, I found it refreshing that they also had other ways people could be part of the healing process.

Showing Gratitude

How do you show gratitude?  Do you send a card, make a phone call, buy a gift or surprise someone with something made especially by you?

After visiting with numerous people in Washington, D.C. for Advocacy Day with the Adult Congenital Heart Association and Mended Little Hearts I felt I had to do something special as a Thank You to the kind people who met with us and listened to our stories. I decided that the typical, Thank You note which I usually calligraphy by hand just wouldn't do. So instead I created very special Thank You notes thanks to Walgreens!

First I uploaded the photos we took at the event to my Walgreens account and then I came up with the following cards:

Since we didn't really get a chance to meet with Senator Cruz to talk, but just went for the Texas Tuesday Coffee (photo opportunity) I shared with him in my Thank You note what I wish I'd had time to talk to him about.

 I was thankful that I had a chance to let Senator Cruz know why Joey and I had traveled all the way from Texas to Washington, D.C. I don't know if he'll ever see that card, but if he does, and he sees Joey or me again, he'll have a better idea of what we'll want to talk to him about!

This card was special because Joey took it so I put the photo of John Coryn's legislative assistant Wes Hambrick,  Mary Adair and me  on the outside:

I put the photo I took of Joey and Mr. Hambrick on the inside.

Luckily we also had a chance to meet with John Carter's legislative assistant, Taylor Gilliam. She was very sweet to us and all of us had a chance to talk to her about what we thought was important. The inside of her card was the same as the previous card.

 The last Thank You card I made was to Amy Baskin at the ACHA. Thanks to Amy, I didn't have to call the legislators to schedule my own appointments. Thanks to Amy and the ACHA I had a chance to learn about how I could be a good advocate for our cause. I wanted Amy and the ACHA to know how much I appreciated what they did for Joey and me.

Here is the inside of the card:

It took a bit of time to create the cards but I hope they were appreciated by the people I sent them to. I sent copies to Mary and Joey, too, to remember our remarkable trip.

I would like to conclude with this quote I found:

"Thankfulness is the beginning of gratitude. Gratitude is the completion of thankfulness. Thankfulness may consist merely of words. Gratitude is shown in acts." ~ Henri Federic Amiel

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 Amazon.com 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:  www.wendylewisbooks.com

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 Amazon.com.

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:  www.GiftoftheLadybug.com

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 (www.kidswithheart.org).  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.