September 18, 2023

We posted this initially on Saturday night; however by Sunday evening, we couldn’t find the post anymore. We’re not sure what happened, but we were also getting some errors when loading the page so we hoped it was a system error and it would come back when resolved. However, it’s still not here on Monday morning, so we’re going to repost it.  

We have a new addition to our family – a baby boy, due in early November. 

His name is David. David Walter John. Named after his grandfathers.

David is the name of his paternal grandfather and means beloved. This child is very much loved. David is also in the Bible, and despite being small and discounted, defeated the giant Goliath. We are hoping that our baby will also be able to take on the challenges in his life, no matter how small he is or how impossible the challenge seems. 

Walter is a family name going back several generations on my side. It’s the middle name of David’s uncle and grandfather, along with the first name of his great and great-great grandfathers. Walter means commander of the army, and we pray that David has the strength of an army commander.

John comes from his Papa John. It means God is gracious. It is our hope, that David feels God’s grace in his life.

And now the diagnosis:

We had our anatomy scan at 19 weeks, where found out David has hypoplastic left heart syndrome (HLHS), which means his left ventricle and aorta artery did not form properly. Essentially, he only has half a heart. The left ventricle is responsible for pumping oxygenated blood from his lungs to the rest of his body. There is no cure for it, but rather a series of 3 surgeries to help his heart function as a single ventricle. Eventually, the single ventricle heart becomes tired and he will need a transplant (sometimes this happens before all 3 surgeries). It is a rare congenital heart defect for which there is no known cause, and approximately 1 in 3800 babies are born with it in the USA every year. 

Since our initial diagnosis, we have learned that David has HLHS with an intact atrial septum, which affects 10% of HLHS babies. This means he has a valve that is typically open before birth that allows some blood movement between the tiny left ventricle and the right ventricle, but David’s is closed. This means any blood that is trying to move from his lungs into the tiny, almost non-existent, left ventricle has nowhere to go since it can’t flow into the right ventricle. This has caused his lungs to develop what is known as Nutmeg lung, which brings with it 100% mortality by age 5 months. We are devastated and are asking for prayers for guidance and comfort at this time. 

This week, we are going to be meeting with the cardiologist to learn more about his latest diagnosis, and figure out how we can best support David.