CHD Awareness Week

Sorry for the length of this post. It had to be long though...it is our story...the story of our amazing little boy and the "heart journey" that started for us before he was even born.

February 7th-14th is Congenital Heart Defect Awareness Week. The following is an excerpt from the Congenital Heart Information Network website (http://tchin.org):

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.

When I was pregnant with Emmett, we went in for our 20 week ultrasound. Joe and I were so excited, full of anticipation, hope, and optimism. We couldn't wait to get a better look at this young life that would forever change our lives. Though some of the details are a little fuzzy now, I clearly remember the sonographer spending a lot of time looking at the baby's heart. She didn't say anything...her facial expression didn't give anything away. At the end of the ultrasound, she said she needed to go speak with the doctor. Joe and I just looked at each other--we knew something wasn't right.

When she came back, she said the words that would forever change our lives--"There is something wrong with your baby's heart." She couldn't give us any details, couldn't diagnose the problem; she just told us to contact a cardiologist at Children's Hospital. We spent the next two weeks before our cardiology appointment waiting...and wondering...and worrying. We had no idea what to expect, and as much as we didn't want to hear the news, we needed to know what we were dealing with.

The echocardiogram took two hours. The cardiologist barely said a word to us, and as much as we wanted to ask questions, we didn't even know where to start. When it was over, Drs. Younoszai and Fonseca took Joe and I into a room, sat down with us, and explained that Emmett had Congenitally Corrected Transposition of the Great Arteries (ccTGA or L-TGA). We, of course, had no clue what this was. They explained as best they could the inner workings of our future baby's unique and complicated little heart. Dr. Y even drew a diagram of his heart (of course at that time, we didn't know that he was a "he" :)

I tried my best to listen to them carefully, but my mind was racing with questions, and the one question that kept repeating over and over in my head was "What did I do to cause this?" I had been so careful throughout my pregnancy. After years of trying to conceive, and one heartbreaking disappointment after another...we felt so blessed to be pregnant that I did everything by the book. I took my vitamins, ate healthy food, drank lots of water, stopped taking hot baths, avoided alcohol, and got plenty of sleep. So WHAT had I done to hurt my baby's heart? I tried to ask this very question, but couldn't get one word out before I started to cry. Dr. Younoszai, as if reading my mind, said "There is nothing you could have done to cause this, and nothing you could have done to prevent it." It was a fluke, a "glitch" while his heart was forming. It was an extremely rare heart defect, he said, affecting only 1 in 25,000 babies, but there were things that could be done to help him live a long and healthy life. He then took my hand, squeezed it, and smiled at Joe and I in a very warm and reassuring way.

On December 28, 2007, God blessed Joe and I with the most amazing gift that we had ever been given...a beautiful and strong baby boy. Our Emmett. Since that day, E has had countless echocardiograms, EKGs and check-ups with Dr. Younoszai, whom we consider part of our extended family now--always greeting me with a warm hug and Emmett with a goofy grin and a high-five. Emmett has also undergone two heart surgeries at Lucile Packard Children's Hospital in California at the expert hands of Dr. Hanley, who will forever be in our prayers for what he has done for us. Though he still has at least one very complicated open-heart surgery left (a double switch) sometime next year, we are confident that he will come out even stronger on the other side.

I tell this story, because it is the story of so many parents. Though the diagnosis may be different for each of our children, and the paths we take are varied, there was still that moment for each of us when we knew our lives would never be the same. We joined a heart family--a network of Moms, Dads, grandparents, siblings, aunts, uncles, cousins and friends trying to make their way through this confusing world of "heart defects" to better understand our heart children, and make the best decisions for them that we possibly can...all the while knowing that they are in God's hands.

I recently joined an online support group for individuals and parents of individuals who suffer from Emmett's condition, L-TGA. All of our stories are different--some children, like Emmett, are thriving...some children did not survive their fight. We are all, however, connected because of a shared journey, which makes us all feel a little less lost.

Although Emmett's heart disease is not something we think about everyday considering how well he is doing, it has not escaped us how lucky Joe and I are to have Emmett in our lives. He is, and will always be, our greatest gift, and we thank God every day for entrusting him to us.

During Congenital Heart Defect Awareness week, please take a few moments to educate yourself about CHDs and perhaps find some way that you can help heart children on their journey.

And to all of you who have prayed for our family during the last two years, we sincerely thank you from the bottom of our hearts.

Blessings,

Missy, Joe and Big E :)

Emmett after his last surgery in December...


Emmett today!