James’ Heart Story

Happy half heart-iversary to my favorite boy

6 months ago, we were going into the hardest day of our lives; the moment we had been dreading since I was 18 weeks pregnant with him. 

Let’s start from the beginning…

I was 16 weeks pregnant when the doctor contacted me and began by saying “I don’t want you to stress but…” but what?! She went on to tell me our baby’s femur was measuring in the 7th percentile. What did that even mean? I had no idea why this mattered. She went on to explain that a short femur could be a sign of a genetic condition or that our baby had stopped growing a few weeks ago. I would have to go in for another anatomy scan at 18 weeks. Waiting a week and a half for this appointment, felt like a lifetime. During this week, we had our gender reveal and found out our baby was a BOY! 

Finally our 18 week appointment arrived. I remember being so nervous. The ultrasound took over an hour. They measured every bone in his tiny body. When the ultrasound tech finished, she asked us to wait because she wanted to consult the doctor. This scared us…did she see something? Was this how it usually happens? A doctor, who was covering for our perinatologist, came to see us and there it was…the moment we were told our baby wasn’t “normal” (that is what she said). She said there were three issues…and she was going to list them in order from least severe to most severe. Here was her list:

1. I had a single umbilical cord artery. 

2. Our baby was measuring in the 3rd percentile this time 

3. Finally, the left side of his heart was underdeveloped

She said things weren’t looking good. Everything pointed to a genetic condition and poor chances of survival. She went on to say that by law we had up to 23 weeks to make a decision on whether or not we wanted to continue with this pregnancy. 

I remember tears just pouring out of me, calling my sister and mom in a panic, and feeling hopeless.

This is where my miracle begins…

I begged God for a healthy baby. I prayed the rosary every single day, sometimes twice. In my heart and in my gut I knew that our baby would be ok. I knew that God would deliver

We went to a pediatric cardiologist. He found that James’ left side of the heart was only slightly smaller than the right. He didn’t think that was the biggest issue, he said it would catch up. The biggest issue was “aortic coarctation” – his aorta has narrowing which would require life saving surgery the moment he was born. He also had a large hole in his heart. He gave us hope though. His demeanor was calm and it was encouraging. 

I had an amniocentesis done. I remember getting a call on my birthday from the genetic counselor. She said his chromosomes came back and there were no duplications or deletions. His genetic make up was normal but “by no means am I telling you that your baby is normal”. She repeated the words “terminate” and “options” so many times. I finally told her that was never an option and her response to me was…that she was surprised. As a healthcare provider myself, I should be more open to the thought. What?! I was upset with her. Why would she say that? Why isn’t he normal? Because he is smaller than other babies? Because his heart isn’t perfect? Lots of babies are born with heart defects, maybe not as severe as his but what made him so different?! I didn’t understand, or maybe I didn’t want to understand. 

I continued my pregnancy, ultrasounds twice a week and growth scans every 3 weeks. Growth scans were always the worst. By the time I was 37 weeks pregnant, James’ long bones (femur and humerus) were in the 0 percentile. They were 9 weeks behind. James was weighing as much as a 30 week baby. That was ok though, he was growing at his own pace…but he was growing and that was good! 

April 14, James decides it’s time to make an appearance – my water broke! I had to have a C-section because he was too small and his heart was too weak to handle contractions. I remember going into the operating room and hearing people yelling “severe IUGR” (intrauterine growth restriction). My older sister, who is a NICU nurse, was already prepared with their NICU team to welcome our baby boy- having her there with me was so special. I was so scared…what would James look like? how small would he really be? Would he survive? Would his heart give us time to do what needed to be done?! It all happened so quickly. James definitely had good lungs. His cry was strong! He weighed 4 lbs 2 oz. Thank you, God. God delivered his promise. I got to hold him for what felt like a second and he was transported to the children’s hospital. 

It was Easter Sunday, and it was the best Easter I’ve ever had. I finally got to see and hold our baby. He was breathing on his own, his aorta didn’t collapse. The doctor’s kept saying he was a mystery…I say he is a miracle. 

We got to go home. James was put on medications to help his heart do all the work it needs to do. We’d go for checkups every two weeks and there weren’t any significant changes. The week of Christmas, we went for our checkup and we got good news. Things had happened in his heart that were unexpected…the narrowing of his aorta was all of a sudden normal and the hole in his heart which wasn’t expected to close…decreased in size by 25%! Another “mystery”! 

Fast forward a year and a half…

I picked up the phone and the words I had feared most poured out…James’ heart is not strong enough, his meds are not doing their job, he needs surgery. They gave us two weeks to prepare for what seemed like an impossible thing to prepare for. In those two weeks, we did lots of things. We celebrated James’ second birthday, we took him to Disney, the beach, the pool, the park, we got him a haircut, we bought new clothes that would be easy to put on and off, we let him eat ice cream for breakfast and dinner, we donated blood for him, and the list goes on. At times, we would almost forget what was coming…which was nice. 

The day before his surgery was a long day and it hit us that this was really happening. It wasn’t a bad dream, it wasn’t something we could ignore. Doctors explained step by step what would happen and then what COULD happen. Our perfect baby boy would be intubated, lay open chested on an operating table, be placed on a bypass machine, then his heart would get fixed as best they could fix it, his chest bones would be closed up with metal wires, tubes would be left in place for drainage and he’d be placed on medications to help his heart pump. Hearing this was hard but hearing what could happen was scarier. Our baby could lose too much blood, his vocal cords could be permanently damaged, his heart might not be able to be fixed, he could acquire infections, he could have seizures, he could have a stroke during or after surgery, he could come out mentally handicapped, he could die. At this point, Jonathan and I are just sitting, quietly listening. Both of us scared to look at each other and break down as we are trying to hold in all the fear we felt and be strong for our baby.  This conversation ended with the fact that although complications do occur, there was a 100% survival rate in 2018. What about the years before that? What about 2019? Survival meant kids didn’t die, it didn’t mean kids didn’t suffer. They didn’t tell us the chances of complications, just that the possibility was there.

So here we are, it’s 7 am and we are changing James from his new pajamas into a peach colored robe. Doctor’s come out to greet us, and get ready to take our baby away. This was the hardest moment…we kissed him, hugged him, cried and let go. As he was being wheeled away in a crib, he lifted his head looking around for us and it was the worst sadness and fear I have ever experienced. 

4 hours later, James came out of his surgery. Everything went well. His heart was fixed, he was breathing on his own, we would get to see him in a bit. We were waiting for him for what seemed like forever. Finally, his bed is coming down the hallway…so many machines! Our baby was sleeping. He looked perfect despite the tube coming out of his chest and the bandages that went from his neck to his belly.

We did it!

Walking for the first time after surgery

It took him a while to come out of anesthesia, this was the worst night of our lives but let’s fast forward to today…

James is doing so great, the doctor said his heart is “normal”. NORMAL! What a word! This journey has been tough but rewarding. Our perfect boy is still small, but he proves that tiny really is mighty. James is a constant reminder of all the things that actually matter. From the day he was born, he’s been my miracle. My baby boy, who doctor’s didn’t think would make it past birth, is here…happy and healthy. He proves to us everyday that only God can know everything. With a grateful and happy heart, we celebrate 6 months of having a healthy heart!

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