“Our family could not have been in a happier place in September of 2023. Our oldest son had just rang the bell after finishing three and a half years of leukemia treatment.

Pregnant with our third boy, I had been diagnosed with gestational diabetes a second time and needed to go see my MFM doctor. Having been through it once, I wasn’t worried and knew what it would be like and how to manage it. I brought my other two boys (1 and 5 at the time) with me to my appointment.

When the ultrasound tech spent more time than usual on his heart, I took a closer look. I could tell his did not look like a normal four-chambered heart and it felt like time stopped a second time for our family.

After a lot of back and forth and finding the perfect cardiologist to trust our baby with, our sweet baby was diagnosed with Ebstein’s Anomaly. Ebstein’s Anomaly is when the tricuspid valve is displaced lower into the right ventricle causing the right atrium to become enlarged and the right ventricle to become smaller, restricting blood flow from the upper to lower chambers on the right side of the heart, and potential backward leaking of blood.

His doctor very accurately predicted how birth would go, and even with that assurance, after having gone through two healthy, uneventful births, I felt completely lost and empty having my baby taken away from me and transferred to another hospital.

We tried to give our baby, who we named Miles, three chances at being able to keep his own oxygen up throughout his first month of life, but his oxygen would remain steady for a bit and then plummet to as low as 39 so he ended up needing a PDA stent placed. He was able to come home a couple of days before Christmas and be with his brothers, which was huge for us.

Miles has done extremely well since coming home with very minor setbacks here and there with his oxygen which typically stays steady around 80. He’s keeping up with his big brothers, and is the happiest, silliest almost 2 year old. Surgeons say he will likely need a cone repair surgery around age 5. Since the cone repair is done so infrequently, we will likely go out of state for it to be done by a highly experienced Ebstein’s surgeon. For now we are thrilled to keep letting him grow and thrive at home!”