I am Elizabeth Roy and I live in Albion, Maine. My second son, Brodyn has Hypo Plastic Left Heart Syndrome, a severe underdevelopment of the left side of his heart. He was born with half a heart, and this defect was not detected in utero, or at birth.
I had a normal pregnancy. I had a repeat C-section, and everything was seemingly okay. The nurses and doctor’s deemed him “healthy.”
We were still in the hospital when I realized his feet were turning purple. I asked the nurses, and they told me this was normal. We were discharged, went home, but things didn’t get better. Brodyn was fussy, and clammy, and still a purply-blue color.
I took him to his Pediatrician, where they couldn’t deny that something was wrong. When they finally did a Pulse Oximetry Test, his o2 was 74%. His temperature was only 94.7. The doctor told us he was in complete heart and organ failure. They put an IV line into his umbilical cord, and immediately were in the works of transferring us to Portland where Brodyn could get the medical treatment he desperately needed.
At just 12 days old, my baby had open heart surgery. Brodyn is 1 in 100 children born with a congenital heart defect. If Pulse Oximetry Testing was a standard newborn test, his heart defect would have been detected. His oxygen level was way below normal.
When my mother told me that the American Heart Association was leading the fight to require all newborns be screened using pulse oximetry, I knew I had to help. I got in touch to tell my story, attended the women’s legislative luncheon and even testified in support of the bill in the Maine legislature. I was featured on a heart health segment on the news as well.
Brodyn keeps fighting and so will I!