Delaney, born 2005
One evening after Delaney was born, I noticed she was a little sweaty and fussy. I took her into our air conditioned bedroom but she didn't get any color and started to breath funny. I noticed she would let out a small moan on every exhale and she became sleepy and stopped fussing. I called our pediatrician explaining the symptoms when Delaney began to turn blue. The voice on the other end of the line urged me to hang up and call 911. The ambulance responded within two minutes, grabbed Delaney and escorted us out. My husband stayed with my 3 1/2 year old until my parents got to our house.
We arrived at the emergency room to find a team of doctors ready for her. It was a scene out of a movie. The doctor on duty knew almost immediately what was wrong and started to explain. To be honest, all I heard was, "wha wha wha...extremely ill...wha wha wha...severe heart condition."
I just sat in disbelief, watching them stabilize her for the helicopter ride to CCMC. My husband and I drove which was the longest 1 1/2 hour car ride of our lives. We cried and prayed the whole time. This wasn't fair! We took good care of ourselves. How could this have happened?
When she was brought in, they escorted us into this room. Doctors and nurses were all around her working vigorously. I was helpless as I watched my weak little five day old baby girl just lay there on that big table, arms out to the side and almost lifeless. I was sobbing. One of the doctors leaned over to me and said, "mom, you did the right thing by calling when you did. If you had waited until the morning, she wouldn't have made it." I then asked, "Can you fix it? Can you make her better?" He replied, hands clenched, "we hope so."
Doctors aren't supposed to say "we hope so"! They are supposed to say, "yes, no problem". I knew all I could do was trust the team of specialists and keep praying. After days of testing, they diagnosed her with Coarctation of the Aorta (COA) and two large Ventricular Septal Defects (VSD).
After ten days in the PICU, she had open heart surgery and did very well. A couple of minor set back did occur. She had a few small seizures and needed extra test (MRI and CAT scan) but two and half weeks later, we were home.
Three weeks later, Delaney had to go back into the hospital. Her incision became infected and needed to be surgically drained and then treated with IV antibiotics. Since then, we have had no problems. She is getting stronger each day and is the most content and smiley little baby I have ever seen. It is almost like she knows she has been given a second chance in life. We are truly grateful and blessed.
Story by Delaney's mom, Erin - CONNECTICUT