IMH Newsletter - April 2010

May 2010

Vol 5, Issue 5

It's My Heart Newsletter

Monthly Spotlight: IMH National Conference

The 2nd Annual It's My Heart National CHD Family Conference

It's My Heart wants to invite you to its 2nd Annual National CHD Family Conference which will be held June 4-6 in Houston, Texas. The conference will consist of some outstanding speakers, informative breakout groups, a panel of adult CHD survivors, and inspirational entertainment. We are excited to welcome Dr. Charles Fraser, Jr., the Chief of Congenital Heart Surgery and appointed Surgeon-in-Chief of Texas Children's Hospital as our main speaker of the day. Dr. Fraser will be able to provide a surgeon's point of view of Congenital Heart Defects and a vast wealth of knowledge on the subject. Another featured speaker will be Paul Cardall, an award winning pianist, speaker, and author who was born with a severe CHD, a single ventricle. Paul will also be performing a concert for us during the course of the day (see Heart Journey below to read more about Paul Cardall). The third speaker of the day will be Dr. Wayne Franklin, an Adult Congenital Heart Cardiologist. In addition to the speakers, the breakout groups will provide practical information for parents such as sessions on your child's medications and dealing with the stress of CHDs. We will end the day with a panel discussion from adults living with CHDs who will give us insight on where their journeys with CHDS have led them.

We're also excited to include our children in this event. Children 5 years and up are invited to come and participate in the classes geared for them. An additional teen summit will give your teen a chance to talk with other CHD patients and discuss topics with other adults who have CHD and have been in their shoes! They are also encouraged to bring their teen siblings and friends to breakout sessions especially with the teen in mind.

We'll end our weekend with a Family Fun Day at the Houston Children's Museum on Sunday.

We hope you'll be able to join us for this exciting conference! The conference fee for ages 13 and up is $35. Children 5 to 12 may attend for free. Please no children under 5. The event is being sponsored by Texas Children's Hospital, Whitney Bank, and BMC Software. For more information please go to www.itsmyheart.org.

From the Medical Advisory Board

Q: Why do some babies with CHDs have to have surgery very soon after birth, while others can wait for several months?

A: Many babies with CHDs can be monitored after birth and are allowed to "go home and grow" prior to their surgeries because their issues are not immediately life threatening. However, there are defects in which surgery must take place shortly after birth - most notably total anomalous pulmonary venous return (TAPVR) with obstruction, transposition of the great arteries and hypoplastic left heart syndrome.

TAPVR of the infradiaphragmatic and obstructed type is an example of where the only treatment is immediate surgical intervention. In this particular instance, all four pulmonary veins do not connect normally to the left atrium. Instead all four pulmonary veins drain abnormally to the right atrium by way of an abnormal (anomalous) connection. There must be an ASD (atrial septal defect) in order for this condition to be compatible with life. If the ASD is small/restrictive to blood flow from the right atrium, then the volume of blood filling the left atrium and left ventricle may be diminished. This can lead to low cardiac output and shock, thus the need for immediate surgery.

With transposition, the blood supply runs in a "closed circuit." Blood going to the lungs for oxygen comes back to the heart and is immediately sent back to the lungs. By the same token, blood being pumped to the body from the heart goes around the body and back to the heart - never traveling to the lungs to be re-oxygenated. Due to the way blood flows while inutero, the baby will receive adequate oxygen even though the anatomy is flawed - this due in part to both the foramen ovale (area between the right and left atrium) and the ductus arteriosis (a small blood vessel that closes shortly after birth - it shunts blood from the pulmonary artery to the aorta bypassing the lungs).

Hypoplastic left heart syndrome is another serious CHD that requires intervention shortly after birth. With HLHS, the left ventricle, mitral valve and aorta are small and ineffectual. Blood returning from the lungs to the heart to be pumped to the body literally has nowhere to go. The child is dependent on both a patent (open) foramen ovale and ductus arteriosis after birth. Because it can be several days before either of these structures begin to close, children with undetected HLHS can be sent home accidentally. Once they begin to show symptoms at home, they are in critical shape and need intervention immediately.

IMH in the News

Isabelle Ouimette, the President of the Boston chapter of It's My Heart and her chapter were spotlighted in the Danvers Kiwanas' Newsletter last month. She spoke at a meeting for the group on behalf of It's My Heart, and their newsletter had this to say about Isabelle: "She has used all her talents to find out how to help her unborn baby and [she] tells of her ride up and down the emotional merry-go-round to help her baby and to educate others about this congestive heart disease. She was instrumental in setting up blogs and websites and in getting a support group [It's My Heart] going for other parents who are going through the same turmoil of a very ill infant with congenital heart problems".

Congratulations to Isabelle for getting It's My Heart and CHDs recognized in her community!

In This Issue:

It's My Heart Chapters

Quote of the Month

With courage you will dare to take risks, have the strength to be compassionate, and the wisdom to be humble. Courage is the foundation of integrity.
Keshavan Nair

National Officers
& Official Volunteers

Corrie Stassen
Executive Director

Katy Wolff
Vice President

Lauren Simpson
Secretary

Alexis Durham
Treasurer

Anissa Speight
Medical Advisory Board Coordinator

Laurie Hutchings
Family Matching Director

Ann Martin
Literature Distribution

Ashley Auzenne
Project Development

Gail Brasser
Project Seamstress

Pamela Floyd
Conference Chair

Allison Johnston
Newsletter Co-Editor

Amy McCathran
Newsletter Co-Editor

Heather Vinson
Financial Director

Kate Shamszad
Child Life Specialist

Jill Vantine
Transition Coordinator

Cailey Fitzgerald
We Got Heart Chair

Tiffany Galligan
Marketing

Ty McCathran
Legislative Liaison

Robyn Steinberg
Web Administrator

Tim Hutchings
Web Admin Assistant &
Graphics

Kim Shadek
Chapter Liaison

Pamela Camit
Chapter Liaison

Visit our Yahoo! Groups

It's My Heart

We Got Heart

Heart's Remembered

Follow Us on the Web

Support It's My Heart

Heart Journey

This is the Heart Story of Paul Cardall. He is an adult living with CHD and one of the featured speakers at the IMH National Conference June 4-6, 2010.

"Paul Cardall had end-stage heart failure. We talked about options. There were no easy options. He could choose to live or choose to die. The latter would be easier. He chose life, not passively, but vigorously, with the kind of energy that left me asking what I had been doing with my own life." -Angela T. Yemtan, M.D., Director Adult Congenital Heart Program Intermountain Region
Thirty-Seven years ago when I was born few children survived a severe congenital heart defect. A few hours after I was born doctors informed my mother they'd taken me to the Children's Hospital for tests and heart surgery. Confused and worried Mom did not know what to think. When my Dad arrived to the children's hospital he overhead the cardiologist on the phone saying to our family physician, "We're probably going to lose that kid."
Meanwhile, my grandmother was with my mom in the hospital where she'd given birth to me hours before. Together they discussed my mom's baby sister who died at birth. My family hoped, prayed, and left things up to God.
Thoracic surgeon Conrad Jensen immediately flew home to Salt Lake City from a conference in California and drove directly to the hospital to perform a life or death surgery when I was 22 hours old. An early cardiac catheterization had discovered only one functioning valve. They were unsure, but believed I had double inlet left ventricle, a mal-functioning tricuspid valve, a large ASD, and my greater arteries were transposed.
There was no CAT scan or MRI. This was 1973 and cardiac surgery was less than 20 years old. Hoping for the best and expecting the worst, my parents received word following the surgery that I had survived. My surgeon performed a POTTS shunt extending my life. Weeks later as my parents met with the cardiologist he suggested at some point I would need some form of major surgery.
I was raised believing I was a miracle and had purpose for living. My parents are people of faith and they instilled in us faith to trust in God no matter what happens. Over the next few years I enjoyed a normal childhood with my three brothers and four sisters. I ran, swam, biked, and hiked mountains. Sure, I was slower than others and often insecure about my scars at the pool, but life was good.
During junior high I fell deathly ill with a staph infection. I was dying and knew it. Our neighbors and friends rallied around my family showing support and love through kind acts of service. After weeks in the children's hospital and several ambulance rides to the brand new MRI, which was parked in a trailer next to the adult hospital, cardiologists discovered a walnut size blister full of staph infection in my heart. Donald Doty, M.D., a brilliant surgeon, carefully removed the blister and put up a new shunt.
A year later I received the Fontan, a brand new form of heart surgery less than a decade old, which would separate my blue and red blood giving me more strength. These were hard months. Surgeons re-opened my chest several times due to complications. I received a pacemaker and continued to receive them through the years.
As a teenager, I found peace and purpose in writing music and striving to serve others as so many had served our family. I believe God gave me strength to endure these challenges. I wouldn't trade my congenital heart defect for anything in the world. I'm a better person for having a chronic illness. My scars are a daily reminder that life is not forever and that all that matters in life is love.
A decade after my Fontan procedure, I married Lynnette and later we had my daughter Eden. My wife is a nurse and has been extremely instrumental in helping me understand and comprehend my CHD.
In 2008, I fell into severe heart failure, due to complication of the "old school" Fontan. I was listed for a heart transplant. As our family waited for this miracle of renewed life, my younger brother was killed leaving behind a pregnant wife and daughter. This was hard. We understood the sacrifice another would be making. After waiting 385 days, deeply humbled by the tragic events of 2009, I received a new heart from a donor.
For the first time in my life I have a four-chamber heart. I don't know why I'm still here, but I pray each day I may live worthy of all that I've been blessed with. I'm not afraid to die anymore. I live each day to serve other people as my donor and so many others have served me.

If you have a heart journey you would like to share, please email your story to newsletter@itsmyheart.org

Houston Zoo Day

Enjoy a day at the Houston Zoo with
It's My Heart!

Saturday, May 8, 2010
Registration deadline: Monday, May 3, 2010

Ticket pickup at the front gate at 9:00 a.m. Plan to stop by the reflections pool at 11:30 a.m. to meet up with the other Its My Heart families. You may pack a picnic lunch or purchase lunch at one of the zoo restaurants to enjoy at that time.

Tickets are free, but please register online:
http://itsmyheart.kintera.org/houstonzoo