Santos James, Heart Warrior

Meet our little fighter, Santos James.

When first receiving the news that we were expecting, my partner Dimitri and I were overjoyed. We were ready to be parents. But on April 28, 2023, during a routine ultrasound, we were hit with overwhelming news. They discovered a complex heart defect. The medical staff informed us that while there were more tests that had to be run, they were about 95% certain it was Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that leaves the left side of the heart severely underdeveloped. The left side of the heart has the important job of pumping oxygenated blood to the entire body. Before we could fully take in the information being given to us, they told us that there are only two options to correct this. The first option was to proceed with the pregnancy and our baby would have to undergo three reconstructive heart surgeries within the first three years of his life. Without the corrective surgeries, the defect would prove fatal... The second option provided was that because I was still under 22 weeks of pregnancy, we could terminate.

You don't ever think it could happen to you. While aware that there are things that can go wrong in life, you never actually think something will happen to you. Yet this did. We were shocked. Speechless. Confused. Devastated. Hopeful that somehow the doctors were wrong. But on May 10, 2023, after an echo ultrasound, they made the official diagnosis. It was HLHS. And due to the time constraint of when I would make 22 weeks, we only had 6 days to make our final decision.

During this time of uncertainty, Dimitri and I had leaned on religion. That following Sunday, May 14, also happened to be Mother's Day. I was really depressed that day. Early in the sermon, listening to the pastor praise the strength of women and mothers, I felt a flutter in my stomach. Then a tight pressure. In that moment, I realized our son was kicking. This was the first time I had ever felt him kick throughout my whole pregnancy. And he continued to kick me throughout the sermon... All that doubt, that fear, washed away. It was then I knew. And when I shared with Dimitri later about how vigorously our son kicked me all through church, he knew it then too. This kid, Santos James, was going to be a fighter. We weren't going to give up on him, and clearly he wasn't going to give up on us.

After sharing with the doctors our decision, they informed us that, unfortunately, our home state of Hawaii wasn't equipped to perform the type of cardiac surgeries our son was going to need. At 35 weeks of pregnancy, they would have to fly us out to Los Angeles, California for an unspecified amount of time. The reason being for this is because his first surgery would be needed within the first week of life, and the second surgery would be needed at 3-6 months. His third surgery would be needed at 2-4 years old. So we left our home, and made the trip to get our son the help he needs. By today, Santos James has had his first surgery. The recovery hasn't been easy, but our little fighter has pushed through beautifully. However, we still have a long way to go. We're fundraising to help pay for Santos James' medical expenses, aftercare needs, and baby must-haves that we were unable to bring with us.

We understand that not everyone is in a place to donate, but we appreciate anyone who has taken the time to learn about Santos James' story or even pray for him. If you would like to learn more about this condition, here's a link: Facts about Hypoplastic Left Heart Syndrome. Or you're more than welcome to message me or Dimitri!

We thank you, and appreciate all your prayers! God bless!