Nichole and daughter Courtney

My beautiful daughter Nichole was born in 1981. She is my third child. I knew something was wrong when they took her to run the normal baby tests, but didn't bring her right back.

Tests results showed she had Tetralogy of Fallot (TOF). She would need repair surgery when around 2 years old so they set us up with Crippled Children's in Portland, Oregon to monitor her care. She was only 7 months old when I noticed her lips would turn blue. I took her to the doctor, and he immediately sent us to Oregon Health Sciences University for a heart catheterization. The next day they did the cath test, and while they were explaining that she would need her surgery to repair the TOF sooner than expected, she turned completely blue and quit breathing. That resulted in them doing the surgery immediately.

Nichole has lead a normal life except for not quite being able to keep up with other kids. She just had to learn to take things slower. She had check ups every couple years and we were told that she would need a valve replacement when she was around 30 years old.

She went on with her life, got married and had a beautiful baby girl named Courtney (2002). Courtney was born with a small VSD and has regular check ups now with a cardiologist. Her last check up showed that tissue was forming around the hole and she will not need surgery, just meds before dental work. That was great news.

We were extremely surprised when Nichole went in for her own heart check up, and they told her that she was in heart failure and needed her valve replaced. She was always a little tired , but just thought it was new motherhood. They did the surgery in 2003 and replaced the pulmonary valve and put a annuloplasty ring on another valve. She had a rough recovery, went into second-degree heart block for awhile. About a year later she noticed palpitations and fluttery feelings, so she was put on a heart monitor, then rushed to the hospital. They have now diagnosed her with ventricular tachycardia (VT a cause of sudden death).

They called this the Honeymoon Phase, because things are good for 20 years and then the honeymoon is over, and the problems begin. She is on beta blockers, which they have had to increase the dosage twice already. This is quite a concern to us, since her father died unexpectedly in his sleep at 36 yrs old (no known heart problems).

Nichole continues to lead a pretty normal life, not knowing what may be around the corner. She is the light and love of our family.