Our Baby's Heart

For those of you that do not know, on August 21st, at our 20 week ultrasound, Lee and I received some devastating news. Our baby has an extremely critical and rare congenital heart defect called Transposition of the Great Arteries or TGA. She'll need open heart surgery shortly after birth for her only chance at survival. Lee and I were completely shocked by this news. The first 20 weeks of my pregnancy was a breeze and we were enjoying every milestone together- hearing the baby's heartbeat, experiencing the ultrasounds, imagining our lives as new parents. We couldn't believe that our baby hit the statistic, 1 in 10,000 for this heart defect, especially since there is no history on either side of our families.

The last 18 weeks have been quite a whirlwind. We've tried to prepare and educate ourselves to the fullest extent possible. We've spoken to numerous doctors, surgeons, nurses, and other "heart" parents and have valued each conversation. We feel so very blessed that we live just blocks away from Children's Hospital of Philadelphia which is one of the best hospitals in the country for pediatric cardiac care. My care has been excellent with the team at CHOP within the fetal heart program. We are fully confident in the entire talented team at CHOP and believe that our baby will be in the best hands. Still it is difficult to put into words the immense fear and anxiety that I feel as I await her arrival. I've tried to continue on these last 18 weeks like a normal pregnancy but that has been anything but easy. Some of the other "heart" moms (that's what they call themselves) did not learn about their baby's heart defect until after the baby was born. In some of their opinions, I have it much worse as I have weeks upon weeks to worry about the future. Lee and I feel lucky that we've learned about the heart defect ahead of time so we can educate ourselves and make the best decisions for our baby. But it has not been easy knowing or shall I say not knowing what the future holds for us. I just hope that I can walk into that hospital with the confidence and grace that my baby deserves from her mother. We have been very blessed to have a tremendous support system. SO many members of our family, friends, and even strangers have reached out to Lee and I. We've been touched by caring thoughts, words, actions, prayers, it's really been unbelievable. Many people have been thinking about our baby and it means more than you know to us. This little baby girl is already loved by so many of you. Thank you.