photo courtesy of GLAD WORKS
"Nine years ago I would never have believed that my daughter would be as beautiful and as brilliant as she is."
by Debbie Brouillard
Editor's Note: Debbie Brouillard's daughter Alyssa was diagnosed with a heart condition when she was 13 days old. She has undergone three open heart surgeries, and at age 9 recently celebrated her success by participating in a fashion show as part of the American Heart Association's "Little Hearts. Big Love." fundraiser. Alyssa's mentor for the fashion show was Deb Koziol, a survivor of cardiac sudden death. Read Deb's story.
Alyssa was 13 days old and I realized that something wasn't right, her being my second child. I took her to the pediatrician's office for the second time that week. Earlier in the week we were sent home with a diagnosis of a cold. I couldn't understand this because I was so cautious of who was around my newborn.
When we got there they took her pulseox and it was something like 52. The nurse looked a little concerned and assumed that the machine was low on batteries. So she came back with another machine and once again got a reading of 52. At this point she panicked and ran for the doctor. He immediately said that she needed to be rushed to Hasbro Children's Hospital and wasn't sure what was wrong. The rescue came and off we went. That is when our nightmares began.
When we arrived at Hasbro ER the nurse was waiting at the entrance and immediately held her and said she looked cardiac. From there we were sent to an ER room with doctors and nurses rushing around hooking her up to machines, IV lines, etc. All I remember is that I felt like I was living an episode of "ER." In about 20 minutes, which felt like a lifetime, Dr. Ziegler, who happened to be called, pulled us aside and told us it was a heart condition. My mind somewhat goes blank from there. Although he was trying to give us information on her condition, all I remember hearing is that she would need multiple open heart surgeries.
After a two-week stay at Hasbro Children's Hospital she went to Children's Hospital Boston for her first surgery. This surgery was called the Norwood. Her condition was hypo plastic left heart syndrome (HLHS). She basically has no left ventricle, which unfortunately is the bigger ventricle of the two. The second was done when she was four and a half months old and the third at two and a half years.
She since has been growing so much better than we ever expected. She has some restrictions with heat and is low on energy, at times, but otherwise at this point functions like any other nine year old. The next step we might have to face will be a pacemaker.
The fundraiser (American Heart Association's "Little Hearts. Big Love") was important because it gives hope to all of the familes of children that are being born at this very moment with heart conditions. Nine years ago I would never have believed that my daughter would be as beautiful and as brilliant as she is. When you hear that kind of news about your newborn all of your hopes and dreams seem to diminish instantly. So if you had to ask me to sum it up in one word, I would say HOPE! She also got to feel so very special in her beautiful red dress that was designed especially for her. We have met wonderful people from this whole experience and we would never have not wanted to be a part of it.