Mar 31, 2017 Latest post:
May 13, 2019
At our 18-week anatomy ultrasound, the tech found a congenital heart defect (CHD) which she believed was Truncus Arteriosus. Almost 2 weeks later, we went to Strong for a fetal echocardiogram with a pediatric cardiologist to hopefully discover what exactly CHD we were looking at. The cardiologist could not see a pulmonary artery at this time, and blood flow was not where it should be, therefore concluding that the baby likely has Tetralogy of Fallot with Pulmonary Atresia, and a definite large Ventricular Septal Defect (VSD), and the possibility of other complications and/or a genetic syndrome. We are hopeful that later scans will show more & we can start to rule out some things with genetic blood testing. As of now, unless we decide to seek a second/third opinion at a larger Children's hospital (Boston, Philadelphia), we do know I will deliver at Strong with a new-to-me OB team (not my usual lovely midwife) & the baby will likely have to be in the NICU to stabilize her until the first of many open-heart surgeries is scheduled, likely within the first 1-2 weeks of her life. As of June 13th, I am 33 weeks with our Sweet Baby Girl & have no complications with this pregnancy. The greatest news is she is thriving in utero since she does not need to rely on her lungs until after birth & they expect I will carry her to full term, hopefully 39-41 weeks. We need her to be nice & strong! We will keep our family & friends updated here as often as we learn new information. We appreciate your continued thoughts & prayers - this baby is loved already & for that, we are so grateful!!