Claires story starts on December 16th at our 20 week ultrasound. While Kenny and I (and our families) were excited to see our little one and find out if the baby was a he or she, ultimately, we just wanted to find out the baby was healthy. Having known friends who received devastating news at their mid-term checkup and ultrasound, we were pretty concerned about the health of the baby. My fears quickly subsided as we saw an active little baby with a beautiful beating heart on the ultrasound screen. During the visit, I asked my OB if there was a way to check the heart for defects at this stage because our 5 year-old, Chloe, was born with several holes in her heart. I explained that the holes are small and the doctors monitor them but they do not feel they will pose a threat to her. He scanned the babys heart as much as our active little one would allow, but my OB felt it would be in our best interest to get better images from a maternal-fetal specialist. Later that evening, we revealed to our families and Chloe that we were having a beautiful baby girl, Claire Adele. I met with the Maternal-Fetal specialist on December 27, 2013. After extensive scanning of Claires heart, I was informed that she has a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of Claires heart was underdeveloped and not working. I also learned that while baby Claire would be born alive, and seemingly healthy, she would require lots of heroic open heart surgeries, treatment and medications throughout her life. As you can imagine, this news was devastating to me and my family, as I walked away with more questions than answers. The MF specialist referred us to a pediatric cardiologist who we saw on January 2, 2014. After more scans, the cardiologist confirmed the diagnosis of HLHS and then proceeded to provide more detail regarding the diagnosis and told us our options. He said that he left ventricle, aorta, and mitral valve (all parts of the left heart) were underdeveloped and not working. While the baby is in utero, the right side can pump blood to the whole body. Therefore, the baby is protected and will likely have a normal entry into the world. Once the baby is born, this is not the case and can be fatal unless treated immediately. There is no cure, nor is this correctable. He then told me my options. Treatment is the first option and comes in form of three, staged open heart procedures designed to make the heart operate with just the right side (half a heart). The first surgery will occur immediately after birth, the second at 4-6 months and the third between 2-3 years. While it may sound simple in writing, its not. The treatment has only been around since the 80s; therefore, the oldest survivors are in their late 20s. If the surgeries do not work or if there are other complications, heart transplantation in an option. The cardiologist mentioned the survival rate after all three surgeries is 60% with the first surgery being the riskiest. The other option, given the severity of the diagnosis, was termination. I think one of the toughest parts of the journey, so far, has been hearing the doctor talk to me about terminating our baby. I never thought I would ever have to be a part of that conversation. We chose LIFE for our Baby Claire! So, whats next?? Like previously mentioned, we are choosing to pursue the treatment plan for Baby Claire. We will be researching delivery options, heart centers to provide the best possible care for our little girl. The good news is that we found out in plenty of time to prepare and have the best team of doctors assembled to take care of baby girl upon her arrival. If all the surgeries are performed without any complications, there is a good chance that she will grow up to lead a normal and happy life. We have a long and treacherous road to travel to get there, but that is our hope and prayer for Baby Claire. We will be updating this page as much as possible to keep everyone informed.
Posted on: Sun, 26 Jan 2014 04:33:50 +0000
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