Seventeen weeks ago Justin and I headed into our 20-week ultrasound over the moon excited to get a better look at our baby girl, but what we ended up learning nearly shattered us. We learned that our girl has a rare heart defect called Dextro Transposition of the Great Arteries (D-TGA) with a Ventricular Septal Defect (VSD). At a high-level, what this means is that our baby’s two main arteries grew parallel to one another instead of crossing, thus pushing oxygen-rich and oxygen-poor blood to the opposite chambers of the heart than it should be.
As you can imagine, we had multiple thoughts racing through our head around what our baby girl’s life would look like. Doctors informed us that while this is scary, most babies are lucky enough to get a one-time surgery within the first two weeks of their life called an Arterial Switch Operation (ASO) that repairs their heart to normal anatomy allowing them to go on living a healthy and fulfilling life. During that surgery, they will likely repair the VSD (hole in her heart) that may be allowing for better oxygenation of blood now, but will make the surgery slightly longer and more complex.
As we near the end of this journey, here is what we know now. Baby girl is a fighter! She weighed roughly 5lbs and 14oz at 34 weeks and is predicted to be over 8lbs around 39 weeks. Through additional testing, we ruled out that this is tied to anything genetically, and is truly just an anomaly that we will likely never know what caused it. With many reassurances from our care team, there is nothing we could have done to prevent this but for some reason, we were chosen as the parents to help guide our girl through this complex journey. We know it won’t be easy. It won’t be easy to be away from our little boy and fur babies. It won’t be easy to watch her hooked up to many wires and tubes. It won’t be easy mourning the introduction we thought Kaden would get with his little sister and the first first few weeks of newborn snuggles and bonding as a family of four, but we are ready to fight for her and the family we know we will be in the long run.
As you can see, it has taken us awhile to process this and feel ready to share our story. We are not people that like to ask for help, but as we prepare for a roughly 4-6 week stay in the hospital post birth, we know we could use all the help we can get. We appreciate any and all support that you can give us to help cover our medical expenses and allow Justin to spend more than the two weeks of paid time off he has with us at the hospital.
We will be sure to keep you all updated as we go on this journey. We know we have a special girl who is strong-willed just like her brother and won’t back down from this fight. We look forward to when our entire family will be together and Kaden gets to spend time with his baby sister that he is anxiously awaiting to meet.
Organizer
Elissa Driver
Organizer
Carver, MN