Kallie - born 2005
My husband and I were expecting our first child after trying to conceive for about 14 months. Because of my age, I was seeing a high risk doctor during my pregnancy. I had several tests and many ultrasounds.
At 22 weeks pregnant, we were given the life altering news that our unborn baby had HLHS. We were given our options of terminating the pregnancy, a 3-staged surgery or transplant, or lastly compassionate care. The day was filled with tears, fear and overwhelming thoughts of the future. We immediately began researching for outcomes of surgeries, where to find the best surgeons, etc., and to learn more about the defect.
The next day we learned of a new fetal procedure done to open the valve of our unborn baby's heart, allowing blood flow to the left ventricle. The decision to give our baby any chance of not needing open heart surgeries after birth was made right away. We had a fetal intervention later that same week at Boston Children''s Hospital. The doctors had successfully opened the valve. We were monitored very closely from that day forward. We drove to Boston every other week for follow up fetal echocardiograms to be sure the valve was still open and to check the function of the left ventricle. There was hope that maybe Kallie would be born with a functioning left ventricle, but we were also realistic that she would in fact still need the surgeries.
Our little miracle was born three weeks early and had her first stage surgery at 8 days old. She recovered slowly but steadily. Kallie behaved as a normal, healthy baby. She had her Glenn procedure at seven months old and recovered quickly. We took her home from the hospital in less than a week after surgery.
Kallie is a happy, growing baby who is thriving every day. We pray for her and thank God often that we have our precious little girl with her special heart in our lives. She has given us a new meaning in life!
Story by Kallie's mom, Stephanie - Connecticut
Kellen - born 2010
Kaitlynn, born 2003