Charlie's Story
Charlie’s Story - as told right before his 1st birthday (March 26, 2022)
My 20 week ultrasound was a week away and my girlfriend who was due around the same time reached out to ask me if I was nervous about my appointment. Nervous? Why would I be? I thought. This was around the time that Chrissy Teigen shared her heartbreaking story about losing her baby at 20 weeks. It felt like we had lived through a year of one horrible tragedy after another (this was November 2020, after all). I replied, everything is going to be fine, those things are so rare!
One week later, I sat through my 90 minute 20 week ultrasound (they usually take about 30 minutes). I didn’t have a care in the world. There was zero doubt in my mind that everything was okay. I’d been horribly nauseous for the first 20 weeks of my pregnancy and I was ready for things to turn around. A couple of days later, our doctor told us that the technician didn’t get accurate pictures of the heart chambers since baby was moving around so much (C is a mover) and we’d have to go back. No worries! When works to go back? I still haven’t asked him if they already knew something was wrong. One week later, a second 90 minute ultrasound of the heart. That night, our doctor called us, usually jovial and calming, there’s something wrong with the baby’s heart. It is very serious. You need to go to the hospital next week for a full day of tests and meetings. I immediately burst into tears and called Peter over to where I was (barely) standing. I asked my cardiologist friend to take a look - I think it is something called TGA, which is fixable, but we need to learn more. This next week is going to be hard.
On November 26th, one day after my 31st birthday, we spent 11 hours in the hospital learning about Charlie’s congenital heart defect. He had Transposition of the Great Arteries. TGA is a serious, rare heart problem in which the two main arteries leaving the heart are reversed (transposed). This was treatable with open heart surgery where they switch the arteries back and the success rate was very high. 95% in fact. But what about the 5%? We were told that there was a chance this heart defect would be accompanied by another syndrome or genetic condition. We spent the next month getting every genetic test imaginable. It became a game of percentages. Do we risk the 1% chance of a miscarriage to get an amniocentesis to find out more about the 10% chance that Charlie had another syndrome when his survival rate was 95% from the open heart surgery?
Somehow a 1% chance of miscarriage felt too high, and a 95% survival rate felt too low.
We waited a full month to find out if there was anything else wrong with Charlie. The news came in two calls: we do not think Charlie has a syndrome associated with his heart defect. It is just a heart defect. Were we relieved? Of course. I guess? We still knew our baby needed to undergo surgery after a few days of being alive.
In January 2021, 2 months before my due date, our doctors started getting more concerned. The hole in the heart that usually comes with TGA and allows the blood to mix to keep the baby alive before open heart surgery wasn’t there. They thought they would see it in utero during one of our many half day visits to the hospital where we did scan after scan, but it didn’t look like it was coming. This was a problem. In order for Charlie to be strong enough for his open heart surgery, he would need to be a few days old and big enough to undergo heart and lung bypass. Most babies with TGA have a hole in their heart which allows the blood to mix but Charlie didn’t. At this point, Charlie’s cardiologist started working with the other members of the heart team and it was looking like Charlie would need an immediate procedure at birth called a Balloon Septostomy to create an atrial septal defect, essentially a hole allowing his blood to mix. The problem was, this needed to be done within minutes of him being born in the Cath Lab at BC Children’s. If I went into labour in the middle of the night, it was very possible that the team would not be there and may not be set up. Charlie could not survive without this procedure for more than a few minutes.
In March we started to monitor more, and it became 100% clear that I needed to have a scheduled c-section so that the situation could be controlled. Charlie’s surgeon decided that he wanted me to be as full-term as possible, so he scheduled my c-section 5 days before my due date. This was coincidentally the same amount of days early that I went into labour with Liam. I could not go into labor before that date. Every single time we went to bed, we ran through the plan if I went into labor. 1) we call the hospital and tell them my situation and tell them to alert my doctor and cardiology 2) we get in the car and call Peter’s family to come get Liam - probably from the hospital because we had to get there within minutes. We must have run through this plan 100 times.
We knew we would need a ton of help with Liam when we were in the hospital with Charlie. We would be there for about two weeks. My family came from California in the middle of a pandemic, quarantined for two weeks, and then planned to live there for another four weeks with my mom and Liam. We had playdates and sleepovers set up with Peter’s family, my parents sent us weeks’ worth of food cooked and frozen, on a cargo plane. Liam’s preschool organized a way for him to stay for a few extra hours a day. Our friends and family sent us meal after meal after meal after meal while we were in the hospital. Liam had an easter egg hunt in the courtyard at the hospital thanks to our families. I’ve never received so many bouquets of flowers. In our darkest hours, we were surrounded by the most amazing love and generosity I have ever experienced. No matter what, in the worst case scenario, we were lucky to have a beautiful, full life.
My C-Section was scheduled for a Friday. On Tuesday, we met with Charlie’s interventional pediatric cardiologist to understand more about his initial life-saving procedure. We had to sign a form that stated we understood the risks of the procedure: death & brain damage were the two that stuck out most to me. This was the day that made us realize what we were really up against. We didn’t know it at the time, but the previous baby that had the same diagnosis didn’t survive. The next few days were a blur of living moment to moment.
On Thursday night, we dropped Liam off at his home for a few weeks with my family at an Airbnb down the street. I don’t remember exactly what happened, but I think I was brushing Liam’s teeth and giving him a bath and I missed a call from our Doctor. Peter got upset that I missed the call and I burst into uncontrollable tears. I was so scared. I didn’t want to leave Liam. I had no idea what tomorrow would bring. Our doctor was calling us to tell us that they had been rehearsing the scenario for two days & reviewing power point presentations of the next day’s plans. There would be 26 people in the operating room, PhD’s holding doors so that they could wheel Charlie to the cath lab to keep him alive.
We went home, tried to sleep, and headed to the hospital first thing Friday morning. I luckily hadn’t gone into labour. We were going to make our scheduled c-section. When they were getting me ready for surgery, our doctor came in and told Peter to come with him, I think he wanted to warn him how overwhelming the operating room would be. We were all nervously smiling. I felt happy. I don’t know how.
When we went into the OR (it was huge….people everywhere), I remember seeing Charlie’s interventional cardiologist. This was the man that would save Charlie’s life and keep him alive long enough to make it to his “big” surgery - the open-heart arterial switch days later. He looked very serious. I had about 5 nurses come up to me, asking me questions, clearly trying to distract me from what was happening. I saw through it. They asked me what I wanted to listen to. Jazz music, I said. Jazz music always felt like home. My spinal kicked in, they cut me open, Charlie was taken out. The second his umbilical cord was cut, I was able to sneak a glimpse at him with the camera they had placed above the bassinet that would be rolled away milliseconds later. He was so cute. I didn’t think he’d be that cute. I was scared to love him as much as I did so quickly. I realized I had completely dissociated myself from him when he was in my body because it was the only way I knew how to survive. But he was here and he was real.
As they stitched me up, all I could think about was sending him a gold stream of love and energy from my heart to his. I hope he felt it.
We knew that he needed to have this procedure completed within 15 minutes to stay alive. After 30 minutes, my doctor came to the recovery room to tell us “he thought everything went ok…but his interventional cardiologist would be down soon.” He came down a few minutes later to confirm this. We quickly texted our families and waited a couple more hours before they were able to move him to the PICU where we would join him.
I felt completely numb. I knew I should feel relief but I could hardly feel anything. Like my body was protecting me from letting go.
They wheeled me on a massive hospital bed to meet him in the PICU. He was covered in wires and had a towel on his head. I asked the nurses if they could take it off so I could see him. They wanted him to stay warm. Nothing has ever felt so good as touching his warm hand. His warm hand. He was alive.
I was still a patient as well so I was wheeled back and forth from the maternity ward to the PICU, where Peter stayed with Charlie. The only time Peter left Charlie’s side was when I told him I needed him to pick me up from the maternity ward, that the porter was taking too long. Or when I pleaded with him to go spend time with Liam since I was too sore to be alone with a toddler. I think we each slept at home (separately because we didn’t want to leave Charlie) only twice, just to feel well enough to survive. We had coffee together every morning. Peter even played music like we did at home. I pretty much just stared at Charlie. I couldn’t read, I didn’t look at anything happening outside of our room and facetime with Liam. It was a big day when I could walk downstairs to see Liam in the courtyard. It hurt like hell.
There were many ups and downs of our two weeks in the PICU. On one occasion, they couldn't get an IV into Charlie’s veins to give him medicine that he really needed, and there were about 10 doctors surrounding his little body. It’s amazing how things can go from OK to scary in a few minutes.
On the day of his surgery, the team told us to leave the hospital. He would be under for about 4-6 hours and staying there wouldn’t help anyone. We went home, I showered, listened to about 5 different meditations on repeat, and we took Liam to the beach. Liam’s presence allowed us not to crumble. We struggled each moment to breathe. Each second felt like an hour.
After four hours, we headed back to the hospital and we were turning into the parking lot when we received a call. Her voice seemed happy. He was ok? Charlie’s mom? Charlie is out of surgery! Peter has never run so fast to get to the waiting room after dropping me off and having to park further away. The surgery had gone well, his arteries were switched. There was one thing they were keeping an eye on, but it was ok. Again, we told our families. Again, I felt completely numb.
The next 8 days in the hospital felt like a year. I was in pain, Charlie was in pain, and Peter was holding us both together. Charlie’s oxygen levels weren’t where they wanted them. And then, on day 11, they were. We were discharged. This was the first day I had worn mascara in about a month. Something so small became a symbol for how I was doing.
It’s been almost a year since Charlie was born. We’ve been back to the hospital for another procedure, and we know that another open heart surgery lies ahead for Charlie to widen his artery (it’s thin from being stretched during his initial surgery). It’s taken me a year to write this story down. In some ways, I look back at that time with heartbreak, and in other ways, fondness. It was the first time in my life I had felt the most severe pain while at the same time, bursting joy. But more than anything, I am grateful for how far we have come and for those who have helped us along the way. Charlie is our most precious gift and we are so lucky.
