Tuesday, May 21, 2013

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!


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.

Sunday, May 12, 2013

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.


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
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)

Monday, May 6, 2013

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:
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
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)