Our story begins on December 19, 2002. I had never heard of CHD before this day. I had a scheduled C section and had no idea that our journey was going to be the start of Congenital Heart Defects. After Olivia was born that day we counted all her fingers and toes and as far as we knew she was a healthy 8lb 12oz baby girl. But what we didn't know is that she had been born with Several Congenital Heart Defects. She was diagnosed within 24 hours with Coarctation of the aorta, pulmonary stenosis, mitral stenosis and hpertrophic cardiomyopathy. At 6 months of age she underwent her first open heart surgery to repair her Coarc of the aorta and Pulmonary stenosis. They removed her pulmonary valve. She has most recently had her second open heart surgery and they replaced her pulmonary valve and removed a muscle bundle in her left ventricle. This is something that they have never seen before. We have also in the last year found out that Olivia has cirrohsis of the liver and an enlarged spleen along with a bleeding disorder. She never seizes to amaze me everyday with her strength and her courage! We believe that she was knit perfectly together in my womb.( Psalms 139:13) And that God intended her to be this way with a specific purpose in mind.
Our story doesn't end there with our CHD journey. In August 2005, we lost a baby girl, Ella Rose, whom doctors believe that CHD along with Cystic Hygroma ultimately took her life. So we continue to raise awareness in honor of not only Ella Rose and Olivia but all those that are affected and who have lost a child from CHD.
This amazing roller coaster ride we know as Congenital Heart Defects has taken our family on quite an adventure along the way but has ultimately led us on the most amazing journey. We have met so many brave and wonderful families just like us and because of them we have hope.
I created this blog to reach more families out there and ultimately spread CHD Awareness and offer Hope. With 40,000 babies being born each year to CHD there will be many more families learning what CHD means for the first time like I did. I believe that with Awareness brings Research. Research brings Hope. Hope brings life. This is the ultimate goal!
