About a week and a half ago at a regular ultrasound appointment the technician indicated that she had a difficult time seeing everything that she was looking for in the baby's heart. She referred us to a specialist without much indication that anything was seriously wrong. Our appointment was scheduled for yesterday. After an extensive ultrasound the doctor told us the likely diagnosis and she arranged an appointment with a pediatric cardiologist a few hours later. After another extensive ultrasound the pediatric cardiologist confirmed the heart defect and we talked about what it meant. Essentially everything will seem relatively normal until the baby is born. Once she is born she will need to have a series of 3 surgeries that will take place immediately after birth, 3-6 months and then 2-3 years. The most risk will be up until the second surgery.
Congenital Heart Disease is common in about 1% of all newborns, and of that hypoplastic left heart syndrome is only 1%of all CHD making it very rare. We are quite fortunate, however, to now be working with the Children's Hospital of Orange County and some great doctors there. The heart surgeon has been there 13 years and has successfully completed the operations that our little one will need.
If you would like more information on HLHS we would ask that you stick to reputable sites, we particularly like the mayo clinic site.
Last night I decided on a family motto, or at least a perspective that we are trying to live by. "Come what may and love it." The message from Elder Wirthlin gives me hope and helps me to first look at the blessings we have and be truly grateful for them. Thomas and I are doing pretty well given all of this. We are staying positive and are putting our faith and trust in God. We have many blessings that are and will continue to help us through all of the eventual struggles. We appreciate your love and prayers in our and our baby's behalf.