Zion, born 2012

My pregnancy was completely normal and healthy. I had morning sickness until the 2nd trimester, I had all normal movement. All of my ultrasounds and tests came back perfectly normal. It wasn't until after my Zion was born that I would find out about his Aortic Stenosis. I had the perfect birth plan, which turned into a beautiful all natural labor and birth.

 

My baby boy was born 7lbs 8oz and 21 and a half inches long. Beautiful boy. I remember feeling his skin on mine for the first time. Amazing. The nurses took him to the nursery after about thirty minutes. They needed to clean him up and do his APGAR test. He scored a NINE! He was so healthy and amazingly alert. The doctors commented about how handsome he was and how great his reflexes were. Then they told me they heard something. A heart murmur. They were not worried. They told me a lot of babies were born with a murmur, they just wanted to make sure it was okay so they ordered an echocardiogram and had the results sent to Syracuse for interpretation. It took 5 hours to get the results. While we were waiting my baby boy was in the nursery away from me. I was so scared. They eventually let him come into my room. It was amazing. I had this amazing little boy and I was nursing him! I couldn't believe it! The next day my world was turned upside down.

 

The doctors came in and told me they wanted to send my baby to Syracuse to stay in the NICU. I cried and cried. I didn't know what to say. This was not in my original birth plan. They took my baby. They transported him to Syracuse. At that point I had to try to get discharged from my hospital bed so I could stand by my baby’s hospital bed 3 hours away from my own. I was terrified. I got discharged and went to be with my boy. We had no money no hotel to stay at. No idea what to do. Luckily doctor Frank Smith, an amazing pediatric cardiologist at Syracuse found us a hotel room for one night and paid for the entire thing! I couldn't believe it. What an amazingly generous man!

 

The doctors worked day and night to find out what was causing Zion’s heart murmur. And then they found it. A narrowing in his main artery. The blood flow was being restricted causing pressure (like if you put your thumb halfway over a flowing hose) they told me that Zion would have to be constantly monitored. They were not sure what would be in-store for him. They wanted to keep an eye on it to see if it would get worse, better or stay the same.

 

After one day we saw it wasn't doing much. It was at a moderate to severe level of narrowing. We would have liked to see mild to moderate. After day three we were allowed to take Zion home as long as we returned for a check-up in two days. And so we did. We drove to Syracuse with my 5 day old baby. We got him his check-up. And we were given the news. Zion would need a balloon inflation procedure done.

 

They wanted to do it at the next available appointment. So we set it up. A week from that day. We went him and cried and worried. Then we got a call. There had been an opening for the Next day. I was in shock. I didn't know what to think. Should I say yes? Should I wait? So many questions were running through my head. I said yes. I set up the appointment. My baby boy was going to have a tiny balloon inflated inside of his heart. I was terrified. When we finally got to the hospital to have the procedure done, I was still worried. But the staff was so great and supportive. Let me tell you, if it wasn't for the amazing doctors and nurses, this experience would have been 100 times worse for us all.

My baby had the procedure done. It took about 40 minutes. I cried and prayed the whole time. God was with us. God with the doctors. The doctor came out and actually said it was extremely successful. He actually said the words, God was with me. I felt such a relief. But I knew I still had to stay overnight in a big hospital with my little baby. We had to stay one night.

 

The next morning I was woken up by Zion’s doctor. Dr. Egan. Amazing man. He was doing an echo right in the room when I woke up. He showed me my baby's heart. He showed me the success from the procedure. I was able to see it with my own two eyes. Amazing. These people saved my baby. We were able to go home.

 

We still see doctor Egan a few times a year, Zion’s heart will never be exactly normal and we will always have to keep an eye on it. But I am happy to say that thanks to God and the amazing doctors and staff at upstate Galasino Children's Hospital, my baby boy will be able to play and grow up into a strong man.

 

I am very happy Zion came into my life. I would like to spread awareness through my story. Not everything can be detected through testing and sonogram during pregnancy. Stay strong and stay aware, spread awareness and support funding for doctors and research. Every life can be saved. Every heart is precious.

 

Story by Zion’s mom, Logan – New York