February 2010 Edition

Heart Issues


Commentary

Congenital Heart Defect Awareness
by Kristiana Pena
What is a congenital heart defect or CHD?  I had no idea until my youngest son, Christopher, was born with a rare CHD, dilated left ventricular non-compacted cardiomyopathy.  Now almost two, we have been on a rollercoaster ride since Christopher's birth.  During our journey, I have personally watched many children go through the unimaginable, and have cried and mourned the deaths of children who I have never met in person.  I have bonded with the parents of these children, in person and through social networking communities such as Facebook, Twitter, blogs, CaringBridge pages, and CarePages, which have provided us ways to communicate, get to know each other and share journeys.

Along with Christopher, these other children are the reason I advocate so passionately for the least known, yet most common epidemic:  congenital heart defects.  A CHD or congenital heart defect is a defect you are born with and have for your whole life.  Open-heart surgery and even a heart transplant are options for some with the condition.  All children have many doctor's appointments and therapies, and many, including Christopher, maintain a complicated medicine regimen needed on a daily basis for survival.

Focus:  Heart Issues

The Heart of a Fighter:   Lorelei's Journey with Hypoplastic Left Heart Syndrome
by Nicole Hoagland
My daughter Lorelei was born with Hypoplastic Left Heart Syndrome.  This is a story of a fighter beating the odds and surviving.

Lorelei was born on June 2, 2005 at a whopping 8 pounds 12 ounces.  She was a perfect, beautiful healthy little girl.  We spent two wonderful days in the hospital enjoying her and trying to gear up for parenthood and midnight feedings.  Two days later we were discharged and took Lorelei home.  As new parents, we were very nervous to start this new chapter in our lives.  We loved on her, fed her, changed her diapers and worried about any little thing that was different. 

For four days we had the perfect healthy child.  And then it happened. 


Cardiac Issues Due to Autonomic Dysfunction
by Lindsay Knops
Before the onset of some odd symptoms in our four year old, Ava, the only "bradys" that I knew of were the Brady Bunch.  I heard the term "tachy" and assumed that someone had mixed plaids and stripes or was wearing white shoes after Labor Day.  It turns out that "brady," which is short for bradycardia or a slow heart rate, and "tachy," short for tachycardia or a fast heart rate, are symptoms of cardiac problems.

I was also completely unaware that a "normal" and healthy heart could be the cause of severe cardiac problems, but such is the case with autonomic dysfunction, also known as dysautonomia.  In Ava's case, her autonomic dysfunction is a result of mitochondrial disease.
(Read More)

One Family's Experience with Congenital Heart Disease
by Chrissy Spayde
My family's journey with congenital heart disease (CHD) began almost 34 years ago, when my husband was born with pulmonary valve stenosis.  He had open-heart surgery at the age of 10, and his defect was able to be repaired.  Congenital heart disease is heart disease that is present at birth, rather than acquired later in life through lifestyle choices or the aging process.  It also goes by the names congenital heart defects and congenital heart anomalies, and is often abbreviated CHD.

Because of my husband's history of congenital heart disease, I was scheduled for a routine fetal echocardiogram during my pregnancy with our son.  It is strange to say that I am thankful that my husband has a CHD, because if it weren't for his history, I never would have had the fetal echo that saved my son's life. 
(Read More)

Specialty Article

GI and Nutrition
Site Care Tips for Feeding Tube Stomas
The instructions for caring for a feeding tube site or stoma are so varied and contradictory that it can sometimes be impossible to know what to do, especially when you are new to feeding tubes.  While there is no one-size-fits-all approach, the following are tried and true tips from parents who have fought the battle and won.

Feature Article

by Pattie Curran
I could write a book on helping children cope with hospitals and medical procedures.  Having two children with Shwachman-Diamond Syndrome, we have seen our fair share of hospitals.  The procedures and hospitalizations affect every member of the family.  No one escapes the stress.  We can minimize the effects of the stress by using active coping strategies. 

In this article, I will address using fun as an active coping strategy to help children cope.  We have all heard about the healing power of humor.  Well, fun and play are also healing for the mind, body and spirit.  Mix fun, play and humor and you are sure to help your child cope with hospitalizations and medical procedures while building a few enjoyable memories along the way.