Welcome To Hypoplastic Right Hearts
The morning of January 30, 2002, I was like any other woman joyfully expecting her first baby. My husband and I went to my midwife for our "20 week ultrasound,” and were elated to see our baby boy, and even as the ultrasound dragged on and the technician told us she had trouble "getting a good picture of the heart," we didn't think of anything but our perfect little boy, Liam. We had 30 minutes of bliss before our midwife broke the news - half our baby's heart was missing!
That afternoon, I was suddenly and forevermore a heart mom. What a difference a morning can make. In the months before Liam's birth we found a pediatric cardiologist but little more. There was virtually no information on the Internet about hypoplastic right ventricles, just hypoplastic left. Since Liam also had TGA, it seemed almost impossible to find information that was relevant or easy to understand. The statistics we found were outdated, for the wrong diseases, or just plain terrifying. I never felt more alone in my life.
Liam’s birth that April, subsequent airlift, and first (Damas Kaye Stansel or modified Norwood) could fill a novel, but by August of 2003, Liam was rapidly approaching his second surgery. Knowing I could NOT be the only one facing this, I trolled through other CHD web sites and message boards and found a handful of women with children like Liam, and on August 15, 2003, Hypoplastic Right Hearts was born.
As of August, 2006, our membership includes over 200 families (and growing) from all over the world. Experiences in our group range from in utero diagnosis to our oldest survivor in her forties. We have had losses and complications, and LOTS of surgeries, but we're a great support system filled with people who hold this challenge in common. We have more than 20 dads in our group, including two members from our board of directors. The dads have a one-off forum as do our angel (bereaved) parents and our adult survivors. The rest of the support group forums, include surgical discussions, developmental concerns, research news, etc., and are open to all members.
In June, 2008, we will gather in Bloomington, MN to meet face to face for our first ever Hearts United event. All members will be welcome, and all who register will qualify for any assistance we are able to provide through our fundraising efforts. We should be 501c compliant by the end of 2006.
I AM a Heart Mom and an HRHS parent. My son, Liam, had FIVE open-heart surgeries before he even had 3 birthdays! I don't know everything about HRHS, but I do know what it's like to find out that your innocent baby has this horrible disease. I know what it's like to hand my child over for risky surgeries over and over again. Most importantly, I know now that I am not alone and now neither are you!
Welcome to Hypoplastic Right Hearts,
Amanda Rose Adams
Founder & President