Saving Little Hearts

James

10/26/92-1/2/93

Fourteen years ago, I was in labor, awaiting the birth of my second child. The nursery was complete, decorated in a blue and mauve floral pattern.
My daughter, 1 1/2, would be sharing her room with her new baby sister.

Or so we thought.

At 1:51 pm, our son was born.

At least the floral print was blue...

I remember my Dad telling me that my family was now complete-a girl and a boy.

The following afternoon, our pediatrician came to give the baby an exit exam so we could take him home. She heard a murmur.

She told me that most murmurs were innocent, but she wanted a cardiologist to check him out, just to be sure.

The next afternoon, we met Dr. Stuart Birnbaum. He drew a picture of our son's deformed heart and called it the most complicated anatomy he had ever seen. Thus, we began our journey into the world of CHD.

Our son was moved immediately to NICU for support during his wait for transfer to LeBonheur Children's Medical Center for heart surgery.

His diagnosis: HRHS: TA, TGA, COA, ASD, VSD

He was missing his tricuspid valve. His aorta and pulmonary artery were switched. He had a narrowing in his aorta. He had two holes; one between the top chambers and one between the bottom chambers. His right ventricle was hypoplastic, or very small-nearly nonexistent.

Over the next nine weeks, there were many highs and lows. Two closed heart surgeries; two pacemaker implant surgeries; almost going home; pneumonia; staph infection; sepsis; organ failure; and finally, removal of life support.

I remember it like it just happened. Can it really be fourteen years ago???

I remember the sadness, anguish, numbness, and yet, strangely, the lifting of that incredible weight I had been carrying during those weeks...

Those nine weeks were some of the very longest weeks I've lived. I learned a lot about myself during that time.

I can. I am strong. I will remember-always.

I am the person (and the mother) I am, not because of his death, but because he lived!