Eloise was prenatally diagnosed at 18 weeks with heterotaxy, and more specifically, left atrial isomerism heterotaxy. “Hetero” means different and “taxy” means arrangement. Her stomach is on the opposite side and she has EIGHT spleens, among other organ abnormalities. Along with her different arrangement of organs, the most serious of all her complications are congenital heart defects associated with heterotaxy. In just her first year of life she has undergone countless procedures and two open heart surgeries — one to place a pacemaker when she was only two weeks old, and another to complete her full repair when she was nine months. My baby is a FIGHTER and I am constantly amazed at her feisty spirit through it all.

More Specifics About Her Heart

Eloise’s heart rate was 62 bpm for most of my pregnancy (a heart healthy baby should be around 140 – 160 bpm) and doctors didn’t know if she would even make it. She is missing an electrical node which the top and bottom chambers of the heart use to communicate (a defect called complete heart block). Because of this, she had a dual chamber pacemaker placed when she was only two weeks old. She was born with three very large holes in her heart. One was an atrial septal defect (ASD), which is a defect in the septum of the top two chambers of the heart. The other two were ventricular septal defects (VSDs), defects in the septum of the bottom two chambers. In her case the holes were so big that it was almost as if there was no septum there at all. This means that the oxygenated and non-oxygenated blood going to and from the lungs was mixing. This made her heart work extremely hard and she had a ton of trouble breathing. In fact, her heart worked so hard that at the time of her full repair at nine months old, it was 50% bigger than it should have been. Other issues she had that I’ll generalize for now: PAPVR, a thickened pulmonary valve, tricuspid valve regurgitation, pulmonary stenosis, interrupted IVC with azygos continuation, malrotated intestines, and a duplication cyst on her stomach.

Eloise truly is our little miracle baby and is a thriving one year old today. She is so loved.