Jace, born 2014

Our journey began about 9 hours after Jace was born and I will never forget that day. My pregnancy had been uneventful and we were told that our baby boy was as healthy as can be at our 20 week scan. After a typical delivery, I had been trying to breastfeed him through the night and remember asking the nurse why he was breathing so fast. She told me it was just because he inhaled a little meconium during labor and was getting everything out. Luckily, there was a shift change and we had a new nurse who immediately noticed something off. She asked if she could take him to get his oxygen tested as she noticed his mouth was discolored. Of course, I thought this was normal in newborns and we would have our son back in a few minutes. When Jace didn’t return to us in 30 minutes, I sent my husband to find out what was wrong. That’s when we were told he had been taken to the NICU to find out what was causing the low oxygen level. 

Despite the fact that our newborn son was hooked up to more machines and wires than we could count, we still thought this was a common occurrence and after they cleared out his lungs, we would be on our way home. The moment the NICU Dr. told my husband and me that the problem wasn’t with his lungs, but his heart, our world stopped. I remember sitting, being there physically, but completely frozen mentally as she started to tell us what was wrong with our beautiful baby boy. A cardiologist met us there and told us that Jace had Total Anomalous Pulmonary Venous Return and that not only do 1 in 100 children have a heart defect, but only 1 in 10,000 receive Jace’s diagnosis. It was in that moment that I thought we were going to lose our son. The one we had fallen in love with since we saw the positive line on the pregnancy test.

Jace was then transferred to Phoenix Children’s Hospital where he had open heart surgery at three days old to fix his plumbing, as his team of doctors explained it to us. We sat there and cried until there were no more tears. We prayed that the surgeon would be able to fix our boy’s broken heart and we hoped that we would soon be leaving with a healthy baby. Surgery went well and Jace got stronger each day. His recovery was smooth and we were home in two weeks. That was the hardest two weeks of our lives. Not being able to hold your son and care for him as first time parents in those first weeks is something we will never get back. What we did learn during that two week stay was that the meaning behind Jace’s name was healing and that is exactly what he is to everyone who knows him!

Fast forward one year later and Jace is now the happiest, silliest, most loving little boy. He has become quite the class clown and will do anything to make someone laugh. He has touched the hearts of all that know him and his journey has inspired us to live with intent. We treasure every moment and know that his outcome could have been much different if it weren't for that amazing nurse who acted on instinct to save our son's life. He has had regular check-ups with the cardiologist and each time gets a great report! He has minor scarring where the veins were attached to the heart and that will need to be monitored his entire life but we are now seeing his cardiologist once a year instead of every three months. I wanted to share his story so that other parents facing the same diagnosis can see that there is hope and so much love to look forward to!

Story by Jace’s mom, Katie - Arizona

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