"At times the forces of the universe are too mysterious and vast for you to control, and the only thing- the best thing- to do is hold on to hope."
On July 28th, our lives were suddenly and radically turned upside down when our sweet Lola was diagnosed with an extremely rare congenital heart defect. Lola was exactly 4 weeks old.
When Lola was born, doctors detected a mild heart murmur, which is quite common and can often be easily detected in small babies due to their thin chest cavity. But by the time her two week appointment came around, her pediatrician was still detecting the murmur. With little concern, she referred Lola to a pediatric cardiologist at Seattle Children's Hospital.
Lola's cardiologist at Seattle Children's, Dr. Maggie Likes, performed an EKG and an echocardiogram (ultrasound) of Lola's heart. The first issue she discovered was the culprit of the heart murmur- a small to medium hole between the right and left ventricles, or chambers, of her heart. This is called VSD (ventricle septal defect). Although scary, these holes can close spontaneously, and make up a large percentage of congenital heart defects.
However, during the echocardiogram, Dr. Likes found an ultra rare defect, almost incalculably so, with Lola's heart. It's referred to as an LPA (left pulmonary artery) sling. When Lola's heart was developing, her left pulmonary artery grew from an abnormal point of origin, out of her right pulmonary artery, wrapping around her aorta and between her trachea and esophagus. Without the heart murmur, the LPA sling would likely have gone undetected for months, resulting in extreme tracheal and esophageal pressure and causing severe respiratory and feeding issues before we even would have known it existed. We are thanking our lucky stars for that murmur.
Our next step is seeing an Otolaryngologist at Seattle Children's the first week of August to determine if and how her trachea and esophagus are affected by the LPA sling. Through various procedures, they will determine more details about the severity of Lola's condition and about her surgery. Both a pediatric cardiology surgeon and otolaryngology surgeon will likely be performing her operation. After the otolaryngology appointment, we will then go back to her cardiologist on August 25th to check the status of her VSD and LPA sling.
What else do we know? Not much. We know that Lola will be undergoing open-heart surgery in the next 2-5 months. We know that surgery is non-negotiable. We know she will be in the Cardiac Intensive Care Unit at Seattle Children's Hospital post-surgery and will have months and months of recovery. We know that we are mentally, emotionally, and financially unprepared for this incredibly difficult and complicated process. But we also know that we live in one of the best places in the world to receive medical care. We know that we are paired with competent and experienced doctors and surgeons. We also know that we have an incredibly wonderful support system through our family, friends, and community. We thank you in advance for your support and patience as we help fix our little Lola's heart.