At 1 day postpartum, our midwife heard a little heart murmur. She asked her partner midwife to come by the following day to listen again and check his oxygen saturation levels. At 2 days postpartum, the murmur was still there, oxygen saturation was not ideal, but Clark was doing really well. Whatever “it” was seemed to be transient and not a big deal. Regardless, our midwife recommended we see the pediatrician. Around 1 week old, the pediatrician also heard the murmur. This time, however, his oxygen levels looked completely normal. Again, same thought, “it’ seems to be getting better but it’d be best to get some imaging on it. We saw the pediatric cardiologist at 12 days old and his echo revealed a congenital heart defect called Tetralogy of Fallot which would need repaired within a few months.
Anthony and I were totally shocked and unprepared for this news. After all, he seemed to be doing so well! Now open heart surgery? On our tiny, sweet baby? The disbelief lingered along with fear of the unknown and intense gratitude for western medicine and the ability to repair his defect. Every time I woke up the following week (a lot of times… #postpartum #naps), I relived the news again and again as I argued with reality.
The last few weeks, however, turned up as we received so much encouragement and reassurance from other families who have walked this path. I am forever grateful to these special souls for opening their hearts and homes to our family. This community helped us feel more peace and acceptance than I knew was possible.
We now have a surgery date of 20 March which feels incredibly imminent. Some of the messy feels are back and that’s okay. Clark’s medical team is fantastic and incredibly technically competent. Our family is making plans to fly out and support the homefront during the week-long hospital stay. I don’t think it’s possible to feel “ready” for this but we are in a good place. We’ll provide periodic updates through this journey.
Here’s a quick explanation of Tetralogy of Fallot (pronounced fah-low). It’s a combination of 4 defects. (1) Ventricular Septal Defect: a hole between his pumping chambers which causes a mixing of oxygenated and non-oxygenated blood. (2) Overriding Aorta: instead of being lined up with the left ventricle, the aorta is directly over the hole between the ventricles. Because of this, oxygen-poor blood travels to the rest of the body. (3) Pulmonary Valve Stenosis: there’s an obstruction at or around the valve that causes less blood to reach the lungs for oxygenation. (4) Right Ventricular Hypertrophy: in response to the previous three defects, the chamber responsible for pumping blood to the lungs works overtime resulting in an overly thick and muscular ventricle.
If left untreated, this condition would result in cardiac failure. With repair, Clark could be the next Shaun White. And he’s halfway there with the red hair 🙂