In January 2019, we traveled back to UVA to discuss Calvin’s health and subsequent life and death with our doctors. We learned that Calvin had a rare variant of hypoplastic left heart syndrome (HLHS) that included an intact atrial septum, which only occurs in 1% of HLHS cases. Most babies with HLHS have a left ventricle that is absent or underdeveloped. Calvin’s left ventricle was always present- it just wasn’t pumping oxygenated blood to his body. In fact, when he was born, his heart was double the size of a typical newborn heart. 

Additionally, because of his heart condition, he had developed a very rare lung condition called pulmonary lymphangiectasia, which also only occurs in 1% of births and carries a very high mortality rate just by itself. Pulmonary lymphangiectasia is also typically undiagnosable in utero.

Our doctors told us that Calvin was so very sick, that there was no medical explanation as to how he lived within me until birth. 

Furthermore, the fact that he lived as long as he did was a miracle, and the only explanation was that Calvin lived to be held and loved on by us his parents and family.

CHDs occur in 1 out of 100 births, and there is no cure for any CHD, only surgeries and interventions that can help children with CHDs to live with broken hearts.

I've learned that though it changes, the journey and grief of child loss is a life long journey. Thank you for continuing to keep our family in your thoughts and prayers.

#CalvinPierce #MotherOfAnAngel #angelbaby #HLHS 

https://www.cdc.gov/ncbddd/heartdefects/hlhs.html