We had our big ultrasound at 21 weeks, we were excited to find out if it was a boy or a girl. I also told the ultrasound tech that I was nervous she would find something. She laughed it off and was very chatty through almost the whole scan, excitedly pointing out that it was a BOY and all of his adorable facial features. Then, towards the end, she stopped talking. I felt the whole atmosphere in the room change. I sensed something was wrong. She couldn’t find what she was looking for. At the end of the appointment the doctor told us that they would send the results of the ultrasound to a perinatologist, and that I should call them to make an appointment. At the time I didn’t feel like this was a big deal. Thousands of women have healthy babies all the time. Why wouldn’t I be one of them?
The first appointment with the perinatologist was one of the most emotionally painful days of my life. No one had told us what would happen at this appointment. We went in blind. I had read so many books on pregnancy, labor, delivery…but nothing about “when things go wrong”. We went through another very long ultrasound, mostly in silence. Then we were taken into a room where we were told that our son most likely had Tetralogy of Fallot (his diagnosis was later changed to Truncus Arteriosus at 32 weeks). They opened up a binder filled with all of the syndromes and horrible things that my baby “could” have that are often linked with heart defects. I started to weep.
The next weeks felt torturous. I climbed inside my own mind. I shut myself off. I would break down in the grocery store parking lot. I no longer felt like I was expecting a baby….but that I was expecting a heart defect, possibly connected to so much more. I felt like my pregnancy had been spoiled. I’m so sad looking back at those last 4 months of pregnancy, how dark they had become. This was supposed to be a light and happy, expectant time. But I felt like I was being marched to the edge of a pit of unknowns. No one could give me a concrete care plan for what to expect. “Every case is different” they said. “We won’t know exactly how serious it is until he’s out of the womb.” The anxiety was so heavy, some days I could barely function.
I was induced a week before his due date, to ensure that the entire heart team was in place in case he needed immediate surgery. It was a normal delivery. He looked so normal, so healthy. Surely nothing was wrong with him. The plan was to get him to either 3 months old or 10 pounds before surgery, whichever came first. Neither happened. At 10 days old, he went into heart failure. He was admitted to the hospital, and surgery was the next day. I remember thinking desperately, “TAKE A PICTURE OF HIS CHEST! HIS PERFECT CHEST!” as they stripped him and started putting monitors on him. I never felt such dread and heartbreak as when I placed Russell into the arms of the anesthesiologist, to be taken back for surgery. Adam and I held each other and wept in the hallway for quite a while before heading upstairs to wait the seemingly endless hours with our family.
That first surgery was the hardest. Because he was so small, they left his chest open for several days afterwards to allow swelling to go down before they could close him. At first we could barely look at him. Just because it was so painful to see my baby like that. With just a thin membrane of plastic covering his fluttering heart. You could see it, beating right there. It was incredible and horrible all at the same time. We were told that he was stable and doing well. They encouraged us to sleep at home so we could be as rested as possible. A couple hours after we got home, the cardiologist on call called us. He said that Russell had a cardiac arrest, and that we should return to the hospital in case it happened again. We later discovered that his heart had stopped while the cardiologist was doing rounds, and that because his chest was still open, the doctor was able to reach in and do cardiac massage….for 10 minutes….and he brought him back.
After that, I didn’t leave the hospital for 2 weeks straight. I didn’t even leave his room. And I slowly went insane. It just never felt like a good time to leave him. There was always another blood test to soothe him through, or he was bloated beyond recognition, and then looking skeletal from the diuretics. It never felt right to leave him.
His 2nd and 3rd surgeries were difficult, but not nearly as difficult as the first. It was still torture to hand him over, and the wait was so painful for us. But, after all we’ve been through I would not trade Russell for ANY other child. Heart healthy or not. If I had a magic wand I could wave that could keep the Russell I know, but heal his heart, and erase all the suffering he’s been through and will go through in the future, would I do it? Yes. Even at this young age, I see him being molded by the circumstances he’s been through. There are so many personality traits that I see being honed and strengthened because of his journey. His sense of humor is intense, he laughs things off even when I tell him it’s ok to be sad. His resiliency is amazing. I have yet to meet another child who bounces back as quickly as he does, be it from physical or emotional pain. He is literally the strongest, bravest, most amazing person I’ve ever met. And I wouldn’t trade him, anything about him, for anything. He has only made our family better, stronger, more beautiful. I think that’s just what heart kids do naturally.