Elena, born 2005

When I was in my 7th month of pregnancy, during an ultrasound with a specialist who was following my placenta previa, I noticed that the doctor was spending a long time looking at the baby's heart. "Is something the matter?" I asked hoping nothing was wrong. "Actually," he said, "there is." I almost passed out. He suspected Tetralogy of Fallot and sent me to a pediatric cardiologist who confirmed the diagnosis.

 

I cried on and off for days - I even had a few nightmares. All this, after I had just breathed a sign of relief after getting my amnio results back as "normal". Turns out, they were normal - no chromosomal abnormalities, that is.

 

Elena was born January 9, 2005 and three days later had her open heart surgery. This came as a shock because the pediatric cardiologist had told us that she wouldn't need her surgery until she was six to nine months of age. But her pulmonary stenosis was so extreme that they had to do the surgery right away. She had her full repair and although it was dreadful having to see such a tiny baby go through this - so quickly that we didn't even get to bond with her - we were relieved that we got it out of the way.

 

She made it through the surgery well. She stayed in the NICU for three weeks - most of that time was trying to get her to feed well, which was quite difficult. We brought her home and I was a nervous wreck - had a few panic attacks because I was so paranoid about caring for my first child and worried that all wouldn't be well with her heart. All was smooth sailing for the next three months until the pediatric cardiologist noticed that there was a pressure build up in her left ventricle which was the result of her narrowed pulmonary artery. Turns out, all was growing well with her heart except her pulmonary artery. Her pulmonary artery had been widened and patched during surgery, but afterward, had developed scar tissue, which prevented it from growing with the rest of the heart. Thus it created a funnel effect in her ventricle. This news was devastating because it meant she had to have a catheterization and open heart surgery if this didn't work.

 

The cath didn't work so our baby had to have a second open heart surgery at five months old. She recovered so quickly, and was out of the hospital in four days! She has been doing incredibly well ever since. Her pulmonary artery has grown and is keeping up with the rest of her heart.

 

You would never know she has been through all of this. She is the happiest, funniest, most loving and charming baby I've ever known. And most everyone who meets her agrees. She is the most perfect baby my husband and I could have ever imagined having.

 

Story by Elena's mom, Courtney - New Jersey